Dinner is cooking so I am going to start my post. I will occasionally leave to stir. But no worries, I shall return.
Today's topic was apparent from the moment I woke up. I even was able to form some of it in my head while at work.
DISCLAIMER: I am going to be unleashing some wrath. If you do no care to experience it then read no further. It is not shallow. It is quite deep. So if you don't care to encounter deep wrath either then I suggest you pick up something like Seventeen magazine...or maybe a cupcake blog.
I am very angry at God.
I have many reasons in this life, but today is not about the history of my anguish. Today it is about a beautiful baby girl who is laying in a bed in the Pediatric Intensive Care Unite for Children's Mercy Hospital of Kansas City.
I have to stir...
Okay...my niece Lainey was born in September of 2011 while I was studying in London. My nephew Landon had been born under two years prior. He was born with a cleft palette. His was not major, but it did present my sister and her husband with a unique set of issues. When they discovered they were pregnant for the second time they decided to get a deeper battery of tests to see if their next child would have a cleft palette as well. Just to be prepared.
I remember it was June of 2011 when they had these tests. I was visiting Michael in Arrow Rock. It was both of our days off so we went to Columbia to see Bridesmaids. None of that is necessarily relevant...but I don't want to forget anything. I remember standing by the door of the theater and hearing that things were more grave than we had anticipated. Jonny was working doubles all weekend and Allison was unable to fully help and my parents were in Kentucky so that day I ended up driving to Saint Joseph to be of assistance in whatever way I could. Maybe I just watched Landon. I don't remember that...I drove back through Arrow Rock the next day or so and then back to Saint Louis for work.
Over the next few months I believe we learned that things were going to be complicated to say the least. I was nervous about going abroad to begin with and knowing I would be missing the birth of my niece did nothing to ease my nerves. I remember we had a big party on the lawn the day Kristine was in labor and I was ill at ease most of the time. I remember periodically going up to my room to check my computer to get information. A lot of this is hazy for me, but some of it is crystal clear. I remember finding out that she was born and was happy, but that things were not okay. She was born breech which meant that there was a problem with her hip and that her heart was having problems. I think I don't remember much, because so much was uncertain. I remember going back down to the party and standing outside the tent and smoking a cigarette...a terrible stress induced habit...that seldom happen(ed)(s). I don't remember what night of the week that was.
I remember a few nights later being on the phone with my dad and things were very grave. They didn't know if she was going to make it. He suggested that maybe I needed to come home for the first part of my fall break which was going to be in a week or so. I really lost it then. I am very blessed to have made such close friends while in London. At this moment it was Hallie, Meghan, and Marie that were really there for me. I also remember Skyping with Michael and just being a complete mess. I didn't know what to do. In the end it was decided that I would stay. And things got better for Lainey. She went home. And so much was unknown. I was gone for two(ish) more months.
When I got back to Saint Louis my entirely family was at the airport. I got to meet Lainey for the first time. I recently discovered a photo I didn't know existed on my mom's old phone that is now my phone of my first time holding her. That night or morning...I don't remember which Lainey was receiving her feed. She has to be fed formula through a tub in her belly button. I was sitting on one hotel bed and Kristine was on the other during her feed. She started to spit up and choke very badly. I couldn't handle it. I started crying. But Kristine is a champ. She just handled it. Made sure her baby girl was okay. After it was all over I told her that I didn't know how she did it every time. She said she didn't think about it. She couldn't. She just did it. What a kick ass mom.
Time to stir...
Back. The next moment of significance, for me, happened about six months later after I had graduated college. I was home with my parents in Kentucky for a few weeks. My mom and I had gone to her friend's house to go swimming. We were lazing about in the pool. Talking about Lainey...I think she may have been in the hospital at that point. But I remember up until that point I had thought that Lainey's life was going to be rough for x amount of years, but she would ultimately live a normal life. It was in this conversation with my mom that I had realized that this wasn't true. I was devastated. I think my mom was the first person in my family to accept this. She has worked with kids with special needs for years. And she is a realist. It's where I get it from. Kristine was accepting it...and was further down the road than I was. My dad had yet to come to the acceptance either. He is above all a man of God, an optimist. He believed that God could truly heal her in that ultimate way. I could be putting words in his mouth...but that is what my mom and I surmised.
A couple of weeks later I was in the car on the way to the airport with Kristine, just her and I. And we talked very candidly about Lainey and the life she would lead and the life Kristine would lead. I know she at points has blamed herself. Her husband Jonny was married before and had two healthy kids. I hated to see Kristine feel this way. Hated it. I still hate it.
Now I am in New York. I remember leaving tech for a show at Primary Stages and talking to my mom or Allison. I don't remember. It had been discovered that Lainey was very, very fussy and they took her to the hospital and found out that one of her legs was broken and the other one had already been broken. This was the first time this had happened. And the doctors were doing their job. Department of Children and Family was called and my sister and her husband's ability to parent was called into question. They weren't allowed to be in the room alone with her. My sister or someone else had to be present. Landon had to be taken to the hospital for questioning. It was a complete nightmare. And I could do nothing. Eventually things were cleared and everything was okay,but that my sister, the most amazing mom in the world be accused of abusing her child is beyond unfair. Words cannot describe.
The next and greatest moment of significance was in February of 2013. Michael was in Saint Louis for the Muny and I was home in our apartment on the Upper East Side. Lainey had been getting sick. She had been admitted to the hospital with the flu...the respiratory kind. Things continued to get worse. I woke up on a Sunday morning. I was supposed to work that evening. I had a call from my dad about how things had taken a turn for the worse. Kristine, one of my best friends in the world, got on the phone, and through tears told me that I needed to come home because Lainey might not make it. I was in complete shock. My dad was in the process of getting me a flight home. I was hysterical. I wanted so desperately to get a hold of Michael. I knew he was in auditions all day. I am very blessed for my community of friends and was able to get in touch with someone in Saint Louis who then put me in contact with someone else who then got Michael for me. What a saint that man is. That is really all I can say. He was supposed to fly back to New York the next day. He offered to fly to Kansas City to be with us. We decided that he needed to come home to work and such. My dad had got me on a flight that wasn't leaving until 6ish in the evening. What was I to do until then? I had very little community at this point in the city...very little. I called Brian and Maria, two of mine and Michael's dearest friends in the world. They had been asleep. I told them what I could manage and they were on their way to me. They came with soup and we sat on my couch and watched Friends. They walked me to the subway...I think Brian carried my bag (thanks again, Brian). We traveled as far a we could and then I went my own way.
Time to stir...last one I think.
I packed my bag before Brian and Maria arrived and I had the thought...do I pack for a funeral? It was an out of body experience. What an awful thing to think. I don't wish it on anyone. I did...and thankfully it wasn't needed. I got in late and wasn't supposed to be able to see her, because visiting hours were over, but I got in. She looked nothing like herself. She was swollen and on a ventilator. When I saw Kristine for the first time and we held each other I think we were both a complete mess. I stayed for the next few days and she began to rally. She was deemed out of the woods by the doctors and I traveled home to New York.
The next moment of significance was in early April. Lainey had another break. I remember I was living in Astoria at this point and Michael and I were walking to Brian and Maria's in Sunnyside. I was at a loss, once again. I was crying while walking down Broadway. I verbalized something I had been afraid to, but was thinking a lot. Would she be better off she had never been born, if she had died. As I am typing this I can't even believe it. I eventually talked to my parents about it. I just think that she is the most beautiful creature in the world. She has never done a single thing wrong to anyone. She doesn't deserve to suffer.
Now it is almost a year later. She has made strides in her life. I haven't given a picture of her thus far. She is deaf. She has very sensitive bones. She can't hold her head up. She is still being fed through a tube. She is now on her ninths broken bone. She also has a very weak immune system. And just a few days ago she tested positive for RSV which is in the bronchitis family and now she is back in the Pediatric Intensive Care Unit where she was almost two weeks to the day a year ago.
I have had many issues with God in my life. But this one probably gets me the most. What did my sister and her husband do to deserve this? What did Lainey do? NOTHING. Why would God create babies that are so broken? All my sister has ever wanted is to have kids and a family. And now she is a mother of four, for all intents and purposes. Lainey is her full time job. Jonny has to to support them all.
I know all of the answers so many have. God only gives us what we can handle. She'll be perfect in heaven. I know it all by heart. And I don't care. It is little to no consolation to me. Keep it to yourselves.
I believe in God. I know he is real. I know he should mean a whole lot more to me than he currently does. But this shit happens and I just can't trust him. I know he can handle this post. I know he can handle when I rail at him. He is God. He has heard it all.
I often think of some lines from Rabbit Hole. In act one scene three. The issue of God has come up and Becca says she doesn't believe in him. The following:
NAT (her mother): What if you're wrong? What if there is a God?
BECCA: Then I would say he's a sadistic prick..."Worship me and I'll treat you like shit."
That is how I feel today...and whenever this stuff happens. And I am not my sister, or her husband or my parents or Allison. They are all living with it more physically than I am. I live here in New York...and that comes with its own set of issues.
I am just so angry at him. And I am ready for him to start proving me wrong.
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