Life after NICU and losing my baby girl

Time for a little honesty…

on 12/05/2011

So, I’ve been doing a lot of thinking and I’ve made some pretty big changes lately. I’ve quit therapy after the therapist and I got into it and I actually left resenting her (the topic we were hashing out has NOTHING to do with why I’m going to therapy, but she insists on bringing up things that don’t have standing with my current problems) and chose to stop going. I’ve also felt that she isn’t doing much to help. Here’s a hint, when over half of your session (50 mins) is her going over the previous sessions (all the way back to #1!) and not even getting all the details right, then spending at least half the time left in lectures, leaving maybe a full 10 mins for me to talk about things that are on my mind NOW, its time to think about either switching therapists or stopping. It was also getting to a point of idiocy in trying to get an appointment weekly, or even every other week! I was lucky to get in every 3 weeks or so. Pretty sad if you ask me. I could go to someone else, but I can’t really see any of it being any different. I’ll just blog. It helped me deal last time, we’ll see what it does this time. I can’t promise daily or even weekly updates, but at least I’m trying.

Another change I’ve been doing is embracing things around me more. I embrace my boys, knowing that my family isn’t all here, but my boys need me just like I need them. I’ve embraced the fact that Anthony sees Bailey almost nightly while I’m rocking him to sleep. He’ll talk to her, reach out his hand, blow kisses, or even just watch as she must be walking back and forth behind me. I think that the times that he’s been scared and staring off in the corner it may have been another family member who has passed that he doesn’t know or maybe its something about how she comes…something. I don’t know, but I’ve become more open to the fact that he sees her. A LOT. He talks to her, he shows he loves her and he delivers her messages. Like the other night when he was looking over by his dresser (in his room, the crib is on the far left, then there’s the glider, and then the dresser. No walking space between the furniture, really) and put his finger to his mouth and said “Shhh, Baby ok” (he could have been saying Bailey ok, but he was really tired and tends to slur the words when he’s that tired) and I suddenly felt the atmosphere in the room change. It went from just a room with us in it to a room filled with warmth. Dare I say it, it felt like so much love in the room suddenly. I instantly burst into tears. I also felt a tingling on my knee, opposite from Anthony. I can’t explain why, but I just melted into a puddle. I’ve been embracing that, don’t want to waste a moment trying to explain it away. Just letting it happen.

I’ve also decided that I’m done being mad at people. I’m done reading someone’s post complaining about waking up several times in the night and taking care of their baby and getting mad that they are complaining about something I want so badly. I’m not going to lie and say that I’m not jealous or that I don’t stop and imagine what it would be like for me to go through those things. Here’s why. I know that the people complaining aren’t doing it to hurt me. I know its them speaking to the whole world about it. No one is coming to me and telling me that I’m so lucky (they all know better), so I can’t be mad. Truth is, I very well might be complaining about the same things if things had turned out different. Now, that doesn’t mean that I don’t have a flash of anger and a thought telling me “OH! They should be so thankful! I’d kill for that”, but I have to remind myself that they aren’t saying these things to be spiteful. They are blowing off steam from a stressful situation (and anyone with kids knows that having and raising kids is HIGH stress!) and are doing it in a public setting like Facebook or their blog. I accept that a lot more now. Thing is, I finally figured out where to direct my anger.

I’m coming forward and admitting I’m still angry. I’m FURIOUS that I don’t have my baby girl. I’m FURIOUS that she was never able to see the light of day while alive. But now I know where I can put that anger. I’m mad at the world. I’m mad at the imperfect world she was born into. If it weren’t for this imperfect world, I’d have a beautiful baby girl sleeping in the pack n play on my side of the bed. She was taken because she was too special for this world. She was too perfect for such a twisted, messed up, imperfect world. I’ve shared this with Adam and he seems to be on board with that. I can’t be mad at God. After all, he blessed me with her pregnancy (as stressful and taxing as it was), a quick and safe delivery, amazing doctors, a NICU that tried everything they could and managed to narrow down what WASN’T wrong with Bailey, the amazing transport people and the nurses that came up to bring that amazing miracle down to a more appropriate NICU that could do what it took to keep her alive, the nurses in the U of M Amplatz that worked hard by her bedside to keep her going and loved her like she was their own, and all the people that surrounded us during this whole journey. God could have taken Bailey during the transport when her chest filled with air and stopped her heart. God could have told the nurses and everyone who kept going with chest compressions to stop. But he didn’t. He gave me 19 more days with that amazing little girl. He blessed me with so much more than anyone could know. I may not have her with me now, but my life is forever changed since. I can’t be mad at Adam. He didn’t do anything wrong. He tried to be so many things to Anthony when I couldn’t be. He spent a lot of time running back and forth, brought me things from home so I wasn’t so strapped for anything, he tried to go to work and keep things going there, everything. He was spread so thin trying so hard. I can’t be even the slightest bit upset with him. I can’t be mad at family because nothing they could have done would have changed anything. Most all the family got to meet her, even people from out of state. And people who didn’t get to meet her came to her wake and or funeral. I can’t be anything but grateful to them for making the effort. And most of all, I have to remind myself that I can’t be mad at myself. I did everything I could think of to give Bailey all the chances she could ever get. I did so much trying to be a good mom, ran myself ragged being there at the hospital 14+ hours a day, being away from my lil man, the whole 9. I have to resolve myself with the fact that what happened to her has nothing to do with anything I did while pregnant. I didn’t cause her health issues. I don’t always remember that it wasn’t my fault, but I try. I just wish I had spent more time doing this and that with her. Wishing I had wiped the blood off her, ask if I could bathe or dress her (mainly just a headband or something like that), read to her more, spent more time bedside, anything to be next to her more.

I think in the back of my mind I may have pulled away from her to save my heart from breaking. Or maybe seeing all the intensive work they had to do on her all day, it was too much for me to handle, knowing my poor baby was fighting so hard to wake up, move, do anything. I do feel guilt for not having done more for her. It wasn’t fair to her. Just something I have to deal with all the time.

I’m sure that anyone reading this could very well be thinking “Well, way to go, sounds like everything is perfect now”. Umm no. Far from it. I still have my moments where I melt into a puddle, don’t want to get out of bed or off the couch, don’t want to even get in the shower and clean up. I often think about how life could be different. I get mad when I hear someone complaining about something petty, but I just have to keep it in perspective. They haven’t had to walk in my shoes and I hope they never do. I still get upset though.

Today we went to the Christmas Remembrance Service at the funeral home. It was a very beautiful service. They had a few touching speeches, light candles while saying each loved one’s name, a small sermon, and capped it off with a special ornament for each family and a very nice lunch. It was really a great way for them to reach out and let us know that we aren’t just customers in their business. After the service and lunch, we did some shopping and went looking for a fake pointsettia for Bailey’s grave. Can you believe we didn’t find one at Walmart, Family Dollar, OR Dollar Tree? That blew us away. We are going to look a few more places and if we can’t find a fake one, we’ll just use a real one. We just don’t want it to look horrible with freezing, thawing, snow, etc. I’d like it to look nice for longer than a few days. If it would get cold and just freeze, it would probably be fine, but with the temps being wonky, who knows what could happen. just something to holidays for Bailey. I don’t know when we are going to be putting out her tree, but we’ll see.

That makes me think of something. I have NO idea who has been putting things out there on her headstone, but thank you. When you lose a child that didn’t get to meet everyone in your family, when you lose someone and feel that the time that they were here was just a dream, it means SO much to know that you aren’t the only person that thinks about that loved one. It makes that person more real. You don’t have to come forward, so I’ll just put it out there for all to see. I thank you. For anyone who doesn’t know, a few weeks ago, I went out to see Bailey’s headstone and saw a small crystal with a little angel, stars, and moon laser etched in there. Just in the past week, someone put 3 beautiful pink roses out there. We saw them on Friday, but they were cold and slightly frozen when we saw them, so we know it was a few days since they were put out. So thoughtful to have others doing things like this for us.

Well, I think I’ve shared the honesty. Just wanted to get it off my chest that things have changed around here. I’m not the same person I was before Bailey was born. I’m not even the same person I was when she was here.

Oh, and if you see one of my facebook status updates and think that you can compare our situations and think that I won’t bury you in your own self centered ways, think again. If you want to compare your child, who is still living, is able to walk, talk, say “I love you, Momma and Papa”, with my child who is BURIED on the EDGE OF TOWN in a CEMETERY that is a FORTY FIVE MINUTE DRIVE just to see her, knowing I’ll NEVER see her walk, listen to her beautiful voice say “I love you” “Momma” or “Papa”, be prepared. I don’t care how hard of a situation you have with your child. You at least get to HOLD your child, not just a photo album, a shirt or dress, a blanket, a stuffed animal, any other momentos. You don’t have to remember watching your child struggle for each breath, especially during their last moments. If you think you can compare children being taken out of your life to live with someone else with my situation, you are wrong. And don’t think I won’t bury you in that crap. I don’t get to see either of my angels until I’m dead and able to meet them, hopefully in Heaven. Situations don’t even match up. Best bet? Walk away. If you feel you need to say something, watch your words. I’m done catering to other’s feelings.


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