I am getting very anxious for the birth of our son. I know it will be nothing like I have already experienced, although he will be similar to Lua, hopefully we will be in a controlled environment and it won't be so traumatic for him as it was for Lua. I'm still very nervous of what the outcome will be, will we hear that cry that every parent longs to hear when their child is born? Or will it be silent in that room when he is born?
When Lua was born and we had a thousand and more questions going through our brains, I have one memory from that time that keeps popping up constantly lately. It was the time that I felt the most scared and yet hopeful at the same time. That was when we just arrived to milwaukee childrens hospital. Hah, me and my husband are so cute, we talked the whole drive on how we will probably be in the NICU a month and how will we ever manage that month, but hopefully we could condense it down to just a couple weeks instead (3 months later....). Anyway, we were sitting in the waiting room right out side the NICU, Lua hadn't arrived yet and once she was there all the specialist would come in to see her and analyze her first before they brought us in. So we sat in that very blue waiting room. Ugh, that waiting room is so very blue. I was so nervous, it was taking forever, I couldn't imagine what was going on that was taking them so long to come get us, I didn't like not being able to just go to her, she was my baby after all and they were keeping us apart so they could 'analyze her' away from us. Bothered me so much. But my husband was on his phone, after we had a name for her contractures, arthrogryposis, he was online finding a support group and posting questions. He had just gotten a response from someone on the question he asked. I remember he told me to read it, as we sat there in that very blue, uncomfortable, waiting room. Everyone on the AMC support group website were very uplifting and supportive. A few others had responded about how their babies were born with very little movement too but once they got bigger and the contractures were not as tight, the kiddos started moving more.
I write this now and it all makes sense... but when I was in that room waiting for Lua reading these things I couldn't understand any of it! I was so overwhelmed, I couldn't understand the simplest of words, I couldn't understand what anyone was saying. I had no clue what was going on. I think that is why this memory keeps showing up, the overwhelming amount of uncertainty that I had with Lua and what would happen, I think it is the same now. I have an overwhelming amount of uncertainty of what will happen with our baby. And I still cannot understand why it happened again, so easily.
I also think that memory, I can see me sitting in that waiting room as clear as day right now! but that memory was the calm before the storm. We left Neenah childrens hospital believing we went to Milwaukee to help her and her contractures. Once the contractures were corrected she would be fine and start moving. We had no clue that the contractures were just a symptom of something much worse. I didn't know muscle weakness was the cause of her joints stuck into position. When we were finally able to go in and see our baby, we were surrounded by doctors. All I wanted to do was hold my baby, but they all wanted to talk.
"Three things have to happen for you to take her home...." one doctor said and he listed what those were.
"Your baby is suffering from a disease that will only make her worse...." the geneticist said.
"Look how weak she is...."
I shut down so fast, I wanted to cry so badly, their words were so not what I was expecting. I stayed quiet and wished they would all shut up. But not my husband, he asked question after question, I wanted to hit him so badly! They didn't care! Didn't you hear them? They are telling us our baby is going to die, they don't care what you ask them.... I was really bitter, but I'm glad he was able to ask question after question.
He asked them... "But she is improving every day."
"No she is only improving from the birth trauma, she will never recover from her disease."
"We have a guess as to what it is, I will have someone come in and give you paper work on them"
I didn't even know she had a disease! No one told us this before this moment right now!
I left the room almost bursting in tears, we had to go check in at the ronald house, but before we left our nurse then asked me, have you held her yet? I could only shake my head no. She tells me, well we will make that happen when you come back... and then I lost it and started sobbing as we walked to our car. Thiago asked me why I was so upset. Really?! He didn't even catch that they were telling us she was going to die! I can't even know what he remembers from this moment, or what he understood from what the doctors said, or what he was thinking... all I could do was die inside.
I so very badly do not want to have another memory like this. I don't want to see doctor after doctor tell us this crap. Things are different now that they believe they know the cause, they know nothing of this disease so they cannot tell us anything of what to expect, which they found out they couldn't tell us about Lua either. She was suppose to NEVER be off the vent. They thought she was brain dead, they never thought she would move a single body part. They eventually just said, well we don't know. Yeah they didn't and they still don't. It is insanely hard to have a child with a disease that people know nothing about. I feel like they don't want to help, and I don't know where or how we will get help for our little boy if there is no one out there that has any idea on his condition.
Anyway, feeling like I got off track. Main point, I'm becoming very nervous and anxious and scared. I'm feeling like the time is getting closer and closer and while I am really anxious to know how strong he will be, what he will look like, who he will be, I am terrified that him being out in the world will slowly start to take him away from us.
I love this line from the book Call the midwife... I could read this over and over, I still don't understand it yet understand it at the same time.
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