Monday, December 27, 2010

our journey is already almost over

For some reason we really didnt understand the severity of our sons disease. The doctors would always ask "you know this is very huge surgery right?" and this one lady would always suggest that we should just not do anything. Then, one of the cardiologists finally sat down today and FULLY explained everything. They flat out said Maddox will probably not make it through this bypass surgery and probably will not be a candidate for echmo. Nor is he a candidate for a heart or liver transplant. They told us he has less than a 10% chance of surviving this surgery. I did not know this. I knew there were risks, but not this big of risks. Then they told us that we would be able to get him stable enough with medications, to be able to take him home for a few months, with 24 hour nursing care and he will be able to go peacefully at home with us, instead of him dying on the operating table or not being able to come off echmo if he was a candidate. Plus, all the risks that come along with echmo are just so much worse. We have not made it official but we are pretty sure we want to take him home and spend however much time we get with him at home. We probably wont be able to go on any vacations like we wanted or take him all the places we wanted to go with him but at least we will get some more time with him and be able to have the kind of passing we want him to have.

I am slowly coming to terms with this. Right now, I am not freaking out, which is why I am blogging now. All day I have been a wreck. They sat down and told us, and I just bawled and bawled and bawled. They called the Chaplin and I talked to her about what they will do with him and where he will go when he passes. I am content with where he will go and we have family in Heaven who will care for him. My dream of him laughing and playing with his cousin Nickolas, will probably go more like Nick pulling him in a wagon or something and making him laugh and taking him to go see Jesus. I picture that and it makes me feel so much better. My son, pain free, in loving arms, and happy. I know he will miss me, and I will miss him more than anything in this world,  but he will be taken care of and he wont have to suffer.

Even if the surgery would have gone okay and he would have recovered, he would still have more and more surgerys through out his life, he would start to itch miserably, and would just suffer more. As much as I want to try anything and everything to keep him here, keeping him here for him to suffer would be extremely selfish of me. We were thinking more about second opinions in other states, but then again, no matter what, he is going to suffer more and more surgerys, itching, and he still is not a candidate for transplant.

I can not wait to take him home. We will take bathes together every night, read stories, and do everything together and just make the best out of every day. I love my baby boy so much. He will always be my only baby. I cant even explain how much he means to me. He is everything to me. I deserved him and he deserved me. We are soul mates. I remember the first time I felt him kick. I was watching Twilight Eclipse and I was laying down, with my hand resting on my tummy, just waiting for it, then what do you know, I felt the tiniest little thump, and then ANOTHER ONE, and then ANOTHER ONE! I was home alone, so it was just a moment of silence where my heart melted and I fell in love. I fell in love with that tiny little foot that kicked within me. I loved being pregnant, as uncomfortable as it was and as bad as I wanted him here, I love knowing we were connected more than we will ever be.

As for breastfeeding, I will continue to pump. The doctor said he may be well enough to breastfeed once a day. All other feedings will go through his ng tube. Once a day is not much but I am so grateful for that. I will miss breastfeeding him so bad. I cant wait for his little suckle though! I hope he remembers how to do it. There is no closer connection outside of the womb, than when you breastfeed, and I will cherish every second of it.

I really want as much family and friends around as possible when he goes. I will want to be skin to skin with him and Ron and I will hold him together.  I want it to be in our bed and I want it to be quiet and peaceful. Earlier I asked questions like where he will go and what they will do with his little body. I learned that I can speak with the people who will take him to the funeral home, and if I dont like them, I can choose different ones. I want to choose the people who I feel will respect him and handle him as if he is still alive. He is my baby and needs to be handled with care, even if he is not alive. I have heard that the people who take the bodies away are rough with them and dont really care. I swear if I have the slightest suspision they will treat him like that I could slap them. I will make sure they understand that I want him handled very carefully and gentle and if I find out they are the slightest bit rough with him, I will find them and kill them, and I am so serious...

I have been thinking a lot about what he will wear for his service, and I found this beautiful little suit with a tie and shiny shoes. He will look handsome as ever and be buried with all his stuffed animals that will watch him while he sleeps.

I will still start scrap booking but I will probably wait to do it til after he passes. I will take TONS of pictures and videos and record everything in a notebook, that way when I start scrap booking I will still have all the information and photos I want, as if Id forget anything anyway. I just dont really want to waste time scrap booking when I could be spending my time with him.

As for school, I do online school anyway but I cant find motivation to do it right now and now that I know Maddox will not have long with us, I will just wait to work until he passes. Even after I dont know how I will concentrate or if I will even give a crap about school.

Every second hurts, and I have a constant head ache.  But I think I will handle everything as best as I can. I know whats best for my son and I know he will be safe. For right now, we will enjoy him while we can. I dont even think I will begin to try to explain how bad this hurts. There are no words. I can try but nothing will help anyone understand the FULL extent of pain a mother who has lost a child has.

I will blog a bit more later, I am SO tired and drained and today has been the hardest day of my life so far. My face hurts so bad. My body aches and I am just very weak and sleepy. I am not breaking down right now. I was all day but right now I am actually okay. If I do not reply to your calls or texts I am sorry, sometimes I just dont want to talk and dont want to be put in the awkward situation of you not knowing what to say. Again, please dont abandon me. I know when someone I know has experienced a death or someone is dying, I just try to avoid the subject or even them because I dont know what to say or do. Please dont do that to me. When Max passes I want to be able to talk about him and smile. I want to remember him and laugh cause he is so cute, not avoid the subject and hold it all in. When hes gone, the only bad thing now is that I will miss him terribly and that I will be broken. But he will be HAPPY and PAIN FREE and in the warmest, safest place he could possibly ever be, so whats so bad about that? I like looking at it that way, it makes it hurt less. I hate to just think of him as dead and gone. He is not, he is going to live on, laugh and play for eternity and one day I will hold him again, I will feed him again, I will kiss and hug him again, and THAT brings me so much comfort.

But for now, he is here, and I will love every second of it...

Thank you all for the support, we love you all!

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