CDH Tornado

It's not easy. I know its not supposed to be easy, thats its not going to just suddenly get easier. There is no magic "cure all" or 'easy" button like in the staples commercials. It doesn't matter how hard I wish there was, there will never be. It doesn't stop me from wishing and praying for a magic "cure all" or "easy" button though. Every day is a struggle, every day holds new obstacled. I can't get comfortable with the now because things are ever changing. I don't mind change, I love change. I feel like i'm in the heart of a tornado that reaking havock and reckage everywhere it goes. I'm not the one causing the dissaray, just stuck in the middle. CDH has turned my life upside down and is continuing to cause it's damage. Liam is taking another turn back down the path that will eventually lead us to another hospital stay. I've been dilagent with Liam's breathing treatments, despite the fact that Im allergic to them. I put on a mask, and deal with the hives, headaches, itchiness and ever increasing symptoms. The breathing treatments aren't working, he's retracting again which means he's struggling. He doesn't sleep but for cat naps during the day then fights it at night. I have to meet the doctor in the morning. Dr Coverston has to go see a patient at Kaweah Delta hospital and wants me to meet him in the ER waiting room so he can eyeball Liam himself and see the retraction. Were changing his feeds, his breathing treatments will change and then we will go from there. Thank God for options. This CDH tornado is reaking havock on my marriage. I'm doing it all. I do Liams feeds, meds, breathing treatments, diapers. If it has to do with Liam, Im doing it. On top of it I get to hear my husband b!tching and complaining every step of the way. He doesn't grasp the concept of Liams condition and him being "special needs". He thinks Liam goes to the doctor too often and that theres no reason to be going and doing all this. His whole theary is that he's fine as long as hes not blue and if Liam shows signs of being in perel or turning color then we take him to the hospital. He doesn't believe in preventative measures. I get the blunt end of it. He gets pissed and complains and raises his voice and I have to hear it like theres not enough stress on me. I feel like he's blamming me for Liam not being "normal" or "healthy". It sucks. It's not fair. It's tearing us apart. The one person that I should be able to run to for help or support is undependable and unsupportive. I have only 1 person I talk to about all of this and even they can't completly know how it feels to be me. It makes me wonder if CDH has torn apart other families or put mountains of stress on them or if I'm the only one. I feel like I'm the only one who feel this way or who is going through this. It's sad because I feel like it would take stress away from me to walk away from this marriage. I feel so confined and alienated. Im stuck out in the middle of nowhere with two kids, two cats and a computer to get me through day to day. I feel like I'm playing a game of poker and the dealer is dealing shitty cards every turn. I know life can be what you make it but all Im seeing right now is meds, breathing treatmants, and hospital stays. The world is sitting on my shoulders and the walls are closing in. I want some peace in my life to replace the depair and anger and feeling of utter failure. I want to believe all the mantra's I repeat in my head or to others. I want there to be no doubts. I want happiness to replace the dissapointment and depression. I want to know that when I tell people "things will get better for us" or "things wont always be this hard" that it's true and not something Im trying to make myself believe as much as others. When I say "I'm fine" or "I'm holding up" I want it to be true and not a sometimes lie or a half truth. I would love to be 100% positive that when I hold my crying son close and tell him "everythings fine, theres no reason to cry" that its true. It seems I lie or tell half truths more than the truth. I spend so much time trying to convince others and myself and reasuring them. No matter how I try to sugar coat the truth its not going to change the situation. Liam is who he is, he will always have issues. I am slowly moving into the acceptance phase of this. I don't freak out and run to the doctor everytime Liam pukes or wakes up have a tiny bit of tachypnea, theres no reason too. What I cant accept is having to do it all on my own and get added stress from the one person who is supposed to be supportive and help ease the stress. I was handed lemons, but i'm not going to make the perverbial lemonaide. Im going to make chocolate cake instead. I don't know how tomarrow will be, let alone the next few hours, but damn it Im going to fight. Im going to be happy, find a way to be happy and deal with the cards I have been dealt. What's done is done. It can't be changed or erased. I will continue to do what's best for my kids, weather they like it or not. I hope and pray for this tornado to dispense, for us to land on steady ground. They keep saying over and over that it gets better after the first year, things settle down to be more normal. The more I read of other CDH cases the more I see that thats not the case. Maybe things don't calm down but we learn to make this the normal or see it as normal. Maybe we just get used to the craziness and frequent health issues, doctor/special visits, hospital stays. My theory is that we either learn to adapt to this life or we will continue to struggle and fight against it and end up crashing and burning in the end. To adapt, i'm going to have to learn to accept this then learn to overcome it. Its hard when the one person thats supposed to be there for you is fighting is to the death and in completle denial. I know i'm supposed to put it in God's hands, all my worries, all my doubts. I pray hard, but my faith is still a bit shaken. I still find myself questioning him, though not quite as often, but I still struggle. I'm still going to wish for that "easy" button that'll "cure all". All it takes is for one tread to be pulled for everything to either fall into place or fall completly to shambles.