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Tuesday, September 14, 2010

Candide, The garden of forking paths and The persistence of memory.......27 weeks and counting....

First not too much to report on Thurston. He is still on nasal cannula and they decided to lower his liters and put him on 100 percent oxygen, much like they were doing in August right before he took a turn for the worse. He had a swallow study done where they found he was NOT refluxing so we need to do some further testing to make any more forward moves. They have talked about trachs and gtubes but we are looking into getting some more testing done before we make any decisions. We still have no idea when he will come home and how. We are kind of in a holding pattern. But for now, he seems to be doing ok and is still the king of the NICU, adored by everyone who meets him.
Its hard to believe, but as of yesterday, Thurston has been in the NICU as long as I was pregnant with him, 27 weeks. WOW. Coincidentally it was this week last year that I became pregnant. I often think about all of those early happy memories, the dreams that I had of my pregnancy, how happy I was when I found out a few weeks later, the thought of my two kids taking baths together, what Violas reaction would have been, the playdates we would have went to etc. Those futuristic dreams are now distant memories. I often think of what our lives would have been like had everything been normal, like I am forever trapped in a Luis Borges novella. Every day is a struggle to remain positive and hopeful but I actually find that recently, I have been moving forward with my life, with our lives. There is something about this entire experience that paralyzes you, you feel as if you cannot move. At first its because literally you are like a deer in headlights, you cant believe any of it is happening, you feel like you are walking around in a Salvador Dali painting full of ants, melting clocks, and vast landscapes that seem to go on forever and nowhere at the same time. Then as you settle into your new world, and routine, you don't really plan because you think, well, he will be home soon, its just a matter of time and then after he comes home, you will settle into a routine and then move forward into the future, into your new life. Then suddenly, you realize, there is no end to this, it could be another 4 to 6 months maybe even longer.

But this last experience with Thurston in August when he had a 50/50 chance of living, I realized that I cannot just sit and wait, I must move forward, I have another child at home, I have a husband, and I have myself to think about as well as my son.

Right before all this happened I decided to open up a vintage shop on etsy, called Dust Bowl Vintage. I have such a passion for the early 20th century, mainly, the Edwardian, Flapper and Depression eras. I also love to sew and wear fashions from those eras so I thought, even with a newborn, I would find some time here and there to dedicate to those endeavors, those passions that I have had nearly my entire life.
I was also in the midst of planning things for my little girl who is growing up so fast. Swimming lessons, dance and/or gymnastics, playdates, preschool were all on the horizon when in February we found out my pregnancy was in jeopardy. My husband was supposed to finish his Masters Thesis as well this past semester in college as well as work on finessing his musical prowess by taking private lessons. All of us had so many goals that stopped completely in their tracks. Life completely halted.

So for about 7 months now everything has been put on a back burner. Our lives became just about survival and hard choices. Everyday our choices revolve around the NICU life, and now instead of "should I sew", "should I work on my thesis", "should Viola take a gymnastics class or a dance class", the choices are now; "do I spend more time with Viola today, or should I go see Thurston"; "do I pump before I go to the NICU or wait until I get there", "should we consider getting him a trach and gtube, or should we wait and just let his lungs heal" etc. Chad has always had to work fairly late, but tried to get home to at least be able to see Viola and read to her before bed. Now he has to make a choice; "Should I see my son after work, or do I go home to see my daughter", not a choice I ever thought myself or my husband would have to make, especially for this long. It is hard, I will not lie. Sometimes I feel like people who are undergoing something like this somehow are held to higher standards, like we have to be more stoic, less whiney, or something, that we are not allowed to ever ever complain or occasionally look at the glass as half empty instead of half full. But every day I see people bitching and complaining about their normal lives and their woes......I think we are entitled to the same privileges.

One of the preemie moms on my preemie message board the other day asked how I remained positive after reading my post "a grain of salt and a pound of hope". I told her that it is BECAUSE I allow myself to feel depressed, scared, sad, whiney,and freak out, etc. How can anyone go through something this life altering and not have a bad day....normal people with normal lives have them all the time, why cant I. The other day, I stopped in a parking lot and just balled my head off for about 15 minutes, completely freaked out and then I felt a ton better. I told her the key that I have found to keeping positive IS by allowing yourself to feel all of the other stuff but just not allowing it to take over. There is a very poignant scene from the tv show "Lost" where Jack tells Kate how he conquers fear:
Lost Scene
This is how I now deal with our situation, I allow myself to feel all of the anguish, depression, and sadness, I allow myself to feel sorry for our situation, and to freak out, but only for a very short time, I don't let it consume me anymore, but I also don't pretend that I am made of steel either. This has allowed me to move forward and to ask for help, and we have received a ton of it lately; just this week I enrolled Viola in both a moms day out AND a dance class. I went thrift shopping for the first time in ages(thanx mommy) and found 10 vintage outfits that look like they walked out of those eras that I adore so much, hell I even fingerwaved my hair today, something I have not done since January. Chad has been working on some side projects for people as well. My moms group is organizing a fundraiser to help us out with the unforeseen costs of having a child in the hospital this long(love you guys!). It seems our lives are slowly but surely moving forward. Most days I am very happy and very grateful and although I envisioned my garden going down a different path, that I will not have that ultimate nirvana that I dreamt of, I realize that I must live in the here and in the great last line in Voltaire's exquisite satire, "Candide", "we must cultivate OUR garden", the only one that truly exists.


  1. Your such a great writer. As I read your inspiring blogs I feel as if I hear your voice and sense the emotions. I'm a supporter of not suppressing one's feelings and definitely see the benefits of venting. Saturday at the little pool we are celebrating PP's 5th, in case ya'll need a Saturday playdate and adult social time, BBQ style 6pm.

  2. I couldn't agree with you more. Often times I feel like my family only wants to hear the good things and they want me to "be positive" or just be happy they are doing as well as they are. I still have very real worries that I wish I was allowed to talk about without being perceived as "negative". You are so right about the rest of the world getting to complain about their very normal lives. It's hard to even listen to anyone else's complaints when they are so minor in comparison. You say all of what I am thinking in a very eloquent way.

    By the way, try to remember that a trach and/or a g-tube (if needed) are reversible procedures. I have to keep reminding myself that for Cade and his possibility of needing a g-tube. It does not mean that Thurston would need it forever. I don't know if that helps you or not as your situation is undoubtedly very difficult, but it helps me.

    Lots of love,