I Have Nightmares

Last night, I had a horrible dream. It was happening. For some reason, we were outside, and when Maddox started to pass, I took him underwater with me and just held him close. For some reason in my dream, that was normal and thats what you were supposed to do when someone dies, was to take them underwater and just left them drift away. But then in my dream, he kept dying, then coming back to life, then dying, then coming back to life. It was torcher...

I am afraid that when we go home, I will always fear that he will die alone while he is sleeping and I will wake up one morning to his lifeless body. We talked to the doctors today about how he will go. The cardiologist said we will probably notice he will start breathing different and being more tired. She also said he might just go into cardiac arrest too though. Hopefully he wont go into cardiac arrest and that he will go slowly so I can hold him until his last breath. If he does go into cardiac arrest, they said I should just let him, do nothing. No compressions, no cpr, just let him go. If he goes slowly, his nurse will come and medicate him so he is in no pain and will go peacefully.

I still dont think it has fully hit me yet. When I am alone, I cant help but think about it and cry. I ache. My entire body aches. My face is swollen and hurts so bad. I would do anything if I could die too and be with him, but I cant. Unfortunately, I have to live until it is my time. I bet God will torcher me, and make me live until I am in my 90s...

I look at my son, and cant picture him not alive. It doesnt seem real yet. I try to stay positive but it is so hard. Knowing that my son will be in Heaven helps. But I am selfish and want him here with me so much more. If he was healthy, he would be so happy here with me. I love him so much. Love is such a simple, small, four letter word, but when I say it in my head, its like a loud, crying out, painfully strong word. LOVE, it HURTS. I dont think anyone could love anything more than I love my baby. He is everything to me. EVERYTHING. What will I do without him? The only thing that is keeping my going right now, is that he is still here and that when he is gone, we will meet again some day. That day, will be one glorious, happy day. I imagine the gates of Heaven opening, and Jesus greeting me with MY baby boy in his arms and handing him over to me. Once again, in slow motion. Everything is so much more beautiful in slow motion. My son smiles at me and I will hold him so closely and smell the smell that I already miss while he is still here. We will wander off together in Heaven and enjoy the rest of eternity, together.

My son and I are so into eachother, so in love. I can tell by the way he looks at me that he loves me and knows that I am his momma. When I feel his warm body, I know it will not always feel this way, and it kills me. The one thought I try to avoid most is his decaying body. It sickens me. I know it is not him, it is just his body but still. I MADE IT! He swam within me for 9+ months. This is one thing I will not think about from here on out. ever...

I just rubbed his head till he fell asleep. He is seriously the cutest little guy Ive ever seen. I love him so much it hurts. I dont know what I will do without him. Actually, I do know. I will go on with my life, I will keep his memory alive, I will work hard to do what I need to do in life and to help other parents who suffer from loss, and I will get a good job and do what makes me happy. Maddox would want me to be happy. I know that because he loves me, and before he got sick, I could get him to smile by smiling so big at him and laughing at him. My smile makes him smile and his smile makes me smile. We will enjoy the time he has here on earth, smiling and laughing with eachother. I will life a period of time without seeing his smile, but one day, I will see his smile again. That brings me some peace and comfort, that one day, we will be together again.

When I watch a movie or fall asleep, I go into a different place. Then when I wake up, I realize what is really going on. I forget that my son is very sick and dying, and it hits me hard all over again. Sometimes I think about it and feel like I cant handle it and that theres no way I will be able to live, but then I remember there are BILLIONS of people going through exactly what I am going through, and they are making it. It will be hard but I think I will be okay as long as I remember these things...

When Maddox passes away, I dont want to freak out. I feel like I will scream and cry. But I dont want it to go that way. I dont want to cry. I want it to be peaceful. I want him to cross over to the new world in silence. I want to be under control and comfortable with it. Sometimes, even just the thought of it makes me scream and cry, but thats why I am trying to prep myself. I know its coming, and I want it to be planned. I will talk more about my plan, not that it will go that way for sure, but if it does, I know how I want to do it. If not, thats okay too, he will be going to to the same place and feel the same love.

One more thing to clear up... Earlier, someone had said this to Ron... "If I were you, I would at least try the surgery because I wouldnt give up on my son"

First off, we are not giving up on our son. The doctors made it clear that Maddox will not survive surgery and will need echmo. They also made it clear that echmo may just hurt him more than help him. Echmo is way more complex and dangerous than it sounds.

2nd, if Maddox were to survive surgery and get off echmo, there would be WAY more surgerys. Surgery after surgery after surgery. He would need a liver transpant, which he is not a candidate for either because of his heart. Either way, he will live a short life, and as he gets older, he would start to itch and be completely miserable from all of these things. To me, that is not a good quality of life. I do not want my baby boy to suffer any longer! He has had enough and I dont want him to be cut open and sore for no reason. I think we can make the best out of the next few months he will have with us and then he will leave us to become an even more beautiful angel in Heaven. There, he will have no pain, no suffering, no surgerys, no tubes, no needles, no transplants. Only love. He will still feel our love and he will know that we will be together again one day.


I am going to stop here for now. At this moment my sweet boy is probably having a very good dream. I am looking over at him right now. He looks very peaceful. He feels our love and knows we are here for him and want what is best for him. Thank you all for the support. Good night.


My sweet boy, mommy knows whats best for you baby and mommy loves you so much. I am bawling right now but its only because I love you so much my little guy. Mommy will give you the best rest of your life that momma can okay? I love you so much and I cant help but cry because I will miss you so so much baby boy. I cant stand not being with you but momma will be okay and we will meet again. For now, we will love every second of each other. Baby boy you are so loved. SO SO SO SO loved. We will all be together again one day, I promise. Momma loved you from the day momma found out you were in my belly. Momma would always worry that she would lose you, and now it feels like she is, but momma is silly. You are in mommys heart always and forever bubba and right now you are with me and momma keeps thinking of when you will be gone. I am sorry for crying buddy but I just love you so much and will miss you so bad. Good night big man, thank you for being strong for mommy. I love you so much, mommys little soldier <3