I know that I have been really strong lately and I know that it is God who gives me the strength to get through this on a daily basis. And I am so grateful for that because I have to take care of my precious baby. But if you think that my little man is going to get a trach and I'm not going to have to vent... you're very wrong. I know I am being negative and no one wants to hear me be this way, but I promise I'll add a positive note at the end. I just have to get it out. I am:
Looking into his eyes right now makes me want to fall down on the floor and cry my eyes out. Seeing my baby with a tube coming out of his neck so that he can breathe, makes me crazy. Have I showed this? No. I have been strong and I have been positive. But there comes a time when you're tired of being positive. I mean, this sucks. Not for me... because I have nothing to do all day but take care of my baby and make sure he gets and has everything he needs. But it sucks for him. He's lying in his crib in ICU and when he wakes up, he goes into panic mode. I can't imagine how he must feel (not to mention the PAIN) but he must be terrified. How scary must it be to wake up and realize that you aren't breathing through your mouth but through a big tube in your neck. And don't tell me that he doesn't know... because his eyes when he wakes up tells you that he knows something is wrong. And I don't want to hear that "he won't remember this, or remember the pain"... I don't care if he will ever "remember" this- he is suffering right now, and that is all that matters. But you know what the saddest part is? I can't even hear my baby cry anymore. I know one day I will be able to. But right now, nothing makes that okay. It is the worst feeling in the world. I feel helpless, when he opens his eyes and looks at me... I feel so helpless. Nothing in this world can prepare you for watching your child this way. It's a horrible and terrifying thing. That makes me sad.
Why him? Why MY perfectly beautiful baby? Is it something that I did? Because I want to be punished, not him. And I try and try and try to tell myself that God gave this to him for a reason. But I just keep thinking... HOW could our Great, Loving, Forgiving God want one of his brand new innocent children to have to suffer so much. How could this be God's will? Seems more like Satan's will and God is hurting just like me. Maybe He is sad too... and maybe He is bringing me all these people to help me through this crisis. Who knows.. and that is the biggest problem. Not me, not my strong optimistic husband, NO ONE knows why this happened. Hopefully one day I will know why. Part of me just wants to SCREAM. Give this pain and suffering to ME. I'll take it... right now I would take every little sore from him, every pain, every tube, every ounce of suffering he is feeling and put it on me so willingly. I want my baby back... and I know that one day I will have him back and everything will be fine. But right now, it's not... and I don't want to pretend like it is.
Don't get me wrong, I've have my share of crying episodes... but I never even get the chance to be sad or mad or anything. For the last 5 1/2 months, my life has been NON-stop. I don't have time to stop and cry, because how selfish would that be? My baby needs me. He needs me to be strong and I don't have a choice. Randy and I didn't ask for this to happen. We thought we were getting ready to have a baby and continue our normal way of life... taking him to baseball games, to the park, OUTSIDE, the mall... anywhere. But that's not the case. I don't think people realize how it is to not just be able to throw your baby in the carseat and take off. Randy and I were both go go go. It's hard when your life comes to a screeching halt. When I was pregnant, I think the thing I was most excited about was to get to be able to go places and show off my baby. Imagine how painful it is when you find out that you just can't do everything you planned. It's like I'm packing for a 3 week vacation when we just have to go to a doctor's appointment. Now with the trach, it will just be more to pack and more to handle.
4. Freaken Tired.
I honestly feel like I haven't slept in like a year. Even when I do get a good bit of sleep, I still feel exhausted. It's more difficult than you think to be able to provide 24-7 care for your sick baby when you are just plain tired. And trust me, I have the help to be able to sleep... but how do you leave your baby who has a feeding tube, a trach, and blisters all over and not feel guilty about going to sleep. I just feel like I'm being selfish when I leave him... it's not his fault he has to go through all of this, so I feel like I should be going through every single second with him. Oh well, I guess "I'll sleep when I'm dead." I think that's how that saying goes, right?
Ok, so here is the positive note... about time, I know. With everything that is going on, I still feel like I am so lucky. Not every mommy gets to spend every second with her baby and not miss a single moment of his life. Not every mommy gets to TRULY appreciate little things like getting to see her baby's arm out of bandages and actually see his little elbow and see his beautiful skin. When he says "Mommy" or "Daddy" for the first time with his trach in... I'm sure there will be no other greater feeling. When a sore finally heals after months of working on it... it's like a feeling of great accomplishment. Right now, I appreciate every single solitary thing that Tripp does. Because I don't know what tomorrow will bring and where we will be or what we will be doing. I feel lucky to have the best family and friends in the world. I would be in a looney-house by now if it wasn't for them. And lastly, I feel so lucky and so blessed to have such a wonderful husband, who stands by me, supports me, is proud of me, and who loves me. Even though he doesn't always show it... i know he does. And that's so important. Thank you Randy, for the husband you are and the daddy you are. Tripp and I are lucky to have you. I know everyone already knows this, but a marriage is hard... try a marriage, a new baby, an EB baby, spending half of your child's life in the hospital, and a WHOLE lot of stress on top. I didn't think it would be easy, but I also didn't think it would be this hard. But we have come a long way and still have a long way to go. I just thank God that we are still trying and still trucking on... because most marriages and most relationships would have been long gone right now. That's why I feel lucky... and blessed.
But some things you just have to get off your chest, and I'm lucky to have people who will listen.
Thanks for listening.