Tuesday, December 21, 2010

I knew it

I am starting to become more in tune with my gut feelings. I have developed some type of anxiety induced, amateur psychic intelligence. Like today, when we dropped my baby sister off at her baby sitters house before we left for the hospital, I had a weird feeling today was going to be horrible. and when I said good bye to her, I just got this overwhelming feeling and all I could do was sit there dumbfounded. Then what do you know, we blew a tire on the interstate and now we got this horrible news. My son will not even live a quarter of a full life. and the majority of it will require major surgerys and hospital stays.

The meeting started off okay, only because the GI doctor started first, and the liver is not the main issue right now. He just explained that every heart surgery will cause strain on the liver and so his liver will get worse with every surgery.  The heart is the main issue right now. His mitral valve especially. They are all just too small to function. They told us that he will probably not survive if we decided that we wanted them to try to repair the valves entirely first. It is just too difficult. But that he would survive longer if we did a temporary fix with artificial valves and some type of cap to cut off the two small valves and create a whole new route of blood. He will need more and more surgerys, but I  just want to keep him here as long as we can. At the most, they said kids with liver and congenital heart disease make it to 6 years old. That is no where near long enough for us. That is my baby. My only baby! I dont even want to think about it. We are just going to try to make the best out of his little life. We are going to do everything we can with him. I want him to experience as much as possible in these few years we have with him.

Towards the end of the meeting, I couldnt hold the tears in any longer. I tried so hard to focus on what they were saying, and not imagining my life without him. Finally, the meeting was over and my mom and I just broke down. I went and saw him and just broke down again, so I went to the bathroom and just sobbed for 20 minutes. It was a different kind of sob. The most helpless sound and feeling Ive ever felt. I felt like I could just die, right then and there in that bathroom. Being a mother is the only thing Ive ever felt so confident about. Ive never loved anything more. I never thought I could feel this much pain, and Ive said it before but its likie PHYSICAL PAIN.  My jaws cramp up and my finger tips hurt and my stomach hurts and I just want to die. The only reason I am not going to die is because I learned that when you kill yourself, you dont go to the same place. and the only reason I would do that is to be with my son, and if I couldnt be with my son then there is no point. In the future, I have a fear that when he passes I will go crazy. I feel like I would do things so I can die faster, like start smoking or be less careful or do drugs or something. I dont want to but I feel like thats what I would do. I do want to die faster  but I dont want to do it like that. But I just have a feeling I will,  and that I wont care. I want to do more research though on where I will go when I die. because if I need to make it to the celestial kingdom where my son will go, I need to be the best I can be so I can go there. I dont even know  what the criteria is for making it to the celestial kingdom. But I need to be there with my son. If I go to another kingdom, I need to know if I will be able to see my son still. I am afraid I have already done too many bad things to make it to the celestial kingdom anyway. I hardly have any knowledge about these kingdoms and how they work so I might even sound really stupid right now. This is just my understanding of them.

I have a dream that when my son passes, he will wave goodbye to me, my cousin Nickolas will be there to greet him and they will hold hands and take off laughing and playing in a field with lots of other children. This dream is a day dream and it goes in slow motion. That dreams makes me feel better.

In addition to my amateur psychic intelligence I spoke of previously, I was right about my son, I was right about my moms boyfriend Andy when he died. Just weeks before I was talking to my mom about how I had a bad feeling about him and that he was going to die soon. I can almost tell by just looking at someone. I probably sound crazy, but thats okay, I kinda am.

Right now, I am just trying not to think about when my son dies. It will be the most excruciating pain. I dont know what I will do, where I will go, or how I will handle it. But I guess when the time comes, whatever happens, happens. I am going to stop replaying my reaction, replaying his death scene, his funeral and everything, and am going to enjoy everything as much as possible. When he is healthy enough, we are going to do everything imaginable.There are no limits now and it is time to live spontaneously because now I am truly experiencing that life is WAY too short. This is it. This is the only time I will have with the most precious thing in the world to me. He is everything to me,  EVERYTHINGughh Im like breaking down again. I just dont understand, and sometimes when I think about it, I get very frustrated and grit my teeth. Almsot resentful at God or whoever did this to us. The big question for me is WHY and I type it so hard on the keyboard. W-H-Y! The one fucking thing that I love more than anything, I swear I would have given up everything for him. Right now I would do anything for him to be healthy. Anything! I would stab myself as many times as needed if it was just fix him!!!!!!!!!!! I cant handle it. I will be okay again in like 20minutes I just get these moments of unbearable pain and just i dont even know.sorrow. I guess. It just hurts. I dont understand and I never will. You can say just put it in Gods hands and pray but it already is and praying wont do anything because GOD is the one behind all of this!  and every other horrible thing that happens in this world! ugh Im sorry,  I just get these uncontrollable moments. I usually always ask for forgiveness because I sometimes say very hateful things to God, and I know thats not the way to the celestial kingdom with my son. I am already not following what I vowed to myself. I said I wasnt going to think about it but I am. I will start over and try again. He is here now and I need to be thankful for just today and not waste this time, this precious time.

I know I need to stop looking into the future  right now, but I am not sure if I will ever be able to have another child after this. The risk of losing another one is just too much for me. I could never love another child as much as I love Maddox. He is my baby. My only baby ever.  I dont want another one ever. He is mine and he will never be replaced, and I feel like if I have another baby in the future, I will not be able to love that baby as much and might even end up resenting the child. I love seeing other peoples babies though. It makes me happy to know that they wont have to suffer. One day Max will not have to suffer, it will be the worst day of my life, but there will also be some comfort  in knowing he isnt hurting anymore. He is healthy in heaven and his beautiful soul is living on and laughing and playing with my cousin Nickolas.

Wow so just 5 minutes ago, I asked if Max will ever have my milk again. The answer is no and for some reason this is hurting more than I thought it would. I cant stop crying. I want to feed him so badly. Maybe when he is healthy he can still just have little snacks from me. So I was keep just enough for him to have a little bit. I want to breastfeed so badly. It hurts so much.  I cant stop crying its just hurting me really bad. ugh this is just too much. I am going to lay down. good bye :*(


  1. hey brooke its rosie my mom just showed me this and i immediately started bawling my eyes out its not fair! why is this happening i wish there was a way to make it better but there isnt and horrible people who dont deserve to even be able to give the gift of life have multiple children!! my friend sara had a stillborn and i asked the same questions! but what a lighter side of this is Maddox doesnt have to feel the pain of this cold cruel world he will never be bullied made fun of in school he wont get robbed he wont have his heart broken the bad things that happen in this world will never happen to him and my Grandma (R.I.P) always said "God is hardest on his children that He loves the most" I love you Brooke. If theres anything I can do please let me know. (even if its something really stupid)

  2. Hey brooke its damon. Im soooo sorry. I saw rons post on fb and then i read this.. Make it the best for him, and everything will pan out. Your still in our prayers.

  3. hey Brooke its Kate, i just sat here and read through everything and i cant stop crying. i feel so horrible, i was so jealous of you and i really didn't even want to see you after i lost my baby. just because i couldn't have my baby so why should you be lucky enough to have a baby you know, and now i feel so horrible for even thinking that. i'm so sorry Brooke. your little man is so damn lucky to have a mom as great as you. and i just hope and pray that in 6 months i can be a wonderful mom like you.

  4. Hi Brooke - you don't know me but my name is Katie and my son Caiden also has AGS.
    I read you blog and totally identify with the guilt you felt when you found out Maddox had AGS - I felt excatly the same way - trying to think what I could have done wrong suring my pregnancy but it was just one of those things that his genes decided to go wrong.
    I looked at other people with their healthy babies and wondered what I'd done wrong to have a child with a disability but I soon realised that my baby boy was a gift to me. AGS children are incredibly special and I truly believe they are only given to special people who can handle it - so please know that you are special.
    I can't imagine what you are going through in the hospital at the moment. AGS affects children is such different ways. But I have learnt that AGS children are SO strong and such little fighters - never give up hope.
    I have sent you a friend request on FB - if you ever need to talk, please get in touch. If theres anything I can do, please let me know. The other liver parents on FB have been such a support for us at the toughest times. Sending lots of love to you and Maddox xx

  5. I don't really use AIM or blogspot or anything, and you don't really know me, but I saw your posts before you had Maddox and I found myself sort of following what was going on through the news feed and stuff. I can't even imagine how horribly difficult it must be to be a teenage mom; and to be a teen mom dealing with THIS kind of stuff.. just unbearable. I've only met you once, really, and that was a super bad time so you didn't really get to meet me even.

    You are a really strong person, though I'm sure you've been told this plenty of times already. Also, I just wanted to say that while there are doctors telling you the worst and you should definitely live every second to the fullest with your son and not expect otherwise, Maddox doesn't have an expiration date. They could always find out it isn't as they thought, or they could find an alternate way to help him; anything. Six years isn't long enough to live, but it is a decent amount of time to try to find other solutions. I really truly hope the best for you and Ron and Maddox, and if you ever want to talk to someone new or just vent or anything at all, even though you don't really know me and the common link we have is kind of.. awkward, just let me know. I already have you on facebook; I'm jessica knotts (yeah, damon's ex).

    merry christmas dear, I sincerely hope things get better for you. <3