Fears and Tears

Every day Liam is growing and doing more. Every day I sit back and I watch him. I watch him smile. I watch him sleep. I watch him breathe. Liam means the world to me. Every day I fight so hard to not "favor" him over my daughter. Every day I fear that something will happen. I feel like I'm waiting, just sitting in purgatory. I find myself suddenly sad or scared for absolutly no reason. I feel like something is about to happen but have no clue as to what that could possibly be. I'm afraid we'll end up stuck in a hospital because he cought a cold or that his g-tube will get pulled out. I'm even scared he will stop breathing on me or that his heart will just stop. I go to bed every night praying to God that when I wake up Liam will still be there in the bassinet breathing and sleeping or smiling back at me. The greatest thing is to wake up and see him smile at me first thing in the morning. That happiness never last long before the fear of what the day will bring sets in. I'm always scared that I'll be at home alone with the kids and have an emergency with Liam and the car won't start and my phone stops working. I don't know if it's just me. I don't read much about how the parent's feel in raising a cherub and feel that it's important to share my feelings in hopes that it will help someone else out there. It's a scary situation. I get asked all the time how I deal with it all, how I'm ok with it all. My response is always the same "because I have to be". I don't have a choice. I have to be strong. I have to be able to deal with my son's health issues. I have to be ok with feeding him through tubes and administering meds. I have to be ok with the fact that my bed room alot like a hospital room. And I have to be ok with answering questions. When I go out with Liam, I sometimes pretend he is normal. If he's not feeding then his gtube is hidden by clothing. People comment on how cute he is and ask's how old. I don't tell them his story unless they specifically ask something. I find that even after 4 months that it's still hard for me to explain what happened with Liam and all we've been through. Sometimes I just give the short answer, he has alot of health issues. I'm not ashamed by him. I love my son and can't really imagine him being any different. I feel that he wouldn't be the same if he hadn't gone through all this. I think that him having CDH just maked me love him more. It feels like my heart could expload from the love I have for my son. That doesn't change my fears. I swear half the time I'm walking around with my heart in my stomach. There's nothing I can do to change his health and I think that's a huge problem for me. When Liam was conceived we weren't trying to have another baby. I was actually on the pill. I did everything right. Took the pill at the same time every day. Used other protection while on anti-biotics for a month after I stopped them everytime. I guess God just decided it was time. I couldn't control conception, then I couldn't control the pain I was in the last few months of my pregnancy. I had no control over labor and delivery. When it came to Liam I had no control what so ever. Not even when it to changing his diapers while at the hospital. Liam was always a suprise, every step of the way. Because of that I keep waiting for more suprises to pop up. He went from being so far behind and all the doctors saying he was going to have lot of health problems to being right on time with his age. In fact he's even ahead on some things. My fear steams from all that and the fact that I have absolutly no idea what the future holds for Liam or for us. He has impacted our lives in so many ways. I'm working hard to overcome my fears, to work through the pain and anger I feel for his condition. I developed PTSD from all this and it's been a roller coaster of emotions. It's harder than I ever thought it would be to get through this. I was on anti-depressants before Liam and now that too has escaladed. Just when I think I have a handle on everything I find out I don't. I'm still waiting for that big breakdown even though I've been fighting against it. I know it should help me to just let it all out and stop bottleing it up but I haven't been able to let myself loose control. I feel like I'll be a failure or weak if I do. All I can do is be a nurse for Liam as well as him mom and do my best. I pray every night for him to continue to improve. I pray one day soon they will not only have answers to CDH but a way to prevent it. I want this to end. I read alot of blogs and updates about CDH babies and everytime I read about one that earned their wings I can't help but cry alittle and hold Liam close. I know I don't know them or their families but I still feel connected to them. Please send a prayer up that we get some answers soon.