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Wednesday, December 29, 2010

Habitat for Humanity...........

Well needless to say this has to be the worst and hardest year of my life, of Chad's life, of Viola's life and most certainly Thurston's life, although thank goodness he wont remember any of it! If anyone would have ever said to me that my brand new baby would be in the hosptial close to an entire year I probably would have told them that that was a mathematical impossiblity. Even when Thurston was first born, and went through all of those dips and turns in the first few months I just still kept thinking about his first birthday and how we would have all of this hospital and medical complications behind us. I even told my uncle that next year at this time(March 8th) we would meet up and how we would all have gotten through our ordeals and that we would celebrate. WOW is that not furthest from the truth. When you are in the thick of all of madness, thinking about the future is sometimes the only thing that gets you through the hardest moments, knowing that in a years time, that you will have gone through it all and survived. Well thank goodness we all survived, but we are in no way shape or form over any of the hard parts, not even close. Thurston will be having his trach surgery on Monday. He will most definitely be in the hospital for at least a month after and most likely through his first birthday. We are relieved with this painstaking decision, but we are also scared out of our minds, from the dangers of the surgery and anesthesea, to the many complications that the trach can bring, and the uncertainty if even that will be enough to bring him home.

And still, there have been some really beautiful moments this year, that unfortunately still does not overshadow the tragic aspects of what has happened to my son and my family, but I would be remiss if I underestimated the enormity of what has carried us through this last year. I cannot even begin to describe the generosity that has been bestowed upon me and my family, the selfless acts of love, the warmth that swooped in and wrapped its arms around our home. Just today we got yet another christmas present at our doorstep (anonymous), and so so many acts of its kind, that continue to lay the foundation on which we are resting upon at this very moment. Each and every act building upon each other like bricks, prayers and love the mortor, providing us with an emotional shelter and keeping us safe from the tedious and harsh environment that has enveloped our lives.

I meant to write an extremely long thank you letter on Thanksgiving, to every single person that I could possibly remember that has helped us, from the smallest gestures, to the hugest of gifts, but of course everyone knows that that night the only thing I typed was 911 into my phone. So I feel that before Thurstons surgery, while I have some time, I would write out in detail everything that I possibly can(and I apologize if I have forgotten anyone), to thank those that have helped us, and maybe for everyone to see just how many beautful wonderful people have participated in building our little habitat for humanity.
(please come back often as I will be constantly adding to this list, and really I did not forget any of you, it just might hit me later on but I will add everyone I swear, you all have meant the world to me)

To Thurston for fighting tooth and nail even when I told you it was ok to let go. Thank you for wanting to live, to be here. I am not sure if I ever mentioned this but your name, had you passed away, was going to be Sterling. Although yes a very vintage old name, it also means 'litte star". I thought if you had passed away, that every night I could look up into the nights sky and find the smallest star, and tell you how much I loved you and that you would always be a shining part of my life. We are forever grateful that you ended up being Thurston instead. Thank you for enduring so much pain and discomfort, even now with so much air shooting up your nose, and tape on your face, and a pulse ox and stickies all over your body, and with so many drugs filtering through your system, and so many pokes and prods, and continued surgeries, I cant even begin to imagine what this has been like for you. You must really want to be here.

To my Husband who thought that he would never be able to handle it if anything bad happened to the pregnancy or the baby....I have to say, you have handled it with the utmost grace, calmness, compassion, and patience I have ever witnessed in another human being. Without you, I truly would be lost forever and I love you with all of my heart.

To my darling Daughter, who has had to endure an entire year witnessing her mother crying, who has been ignored more times than I care to think about, and yet who has more patience and whines less than most adults I know. Thank you for being such a wonderful big sister and giving up so much for your little brother, I adore you and you are my hero.

I am really tired now, and I will finish this in the next few days but I wanted to update you and again thank every single person whose kindness you will never know has made an unbelievable impact on our lives, and without, we quite literally may not still be standing. Thank you thank you thank you..

Thank you to all of the nurses(especially his primaries Mommy Ami, Gladys, Lourdes, Mary Lou, and also Terri, Linda, Heidi, Corina, Analise, and every nurse at North Austin I think you all had him at one point or another and to his Dell primaries Michelle and Peter and all the other wonderful nurses at Dell, All of the doctors and at North Austin and Dell, to Yvette the director at North Austin all respiratory therapists(oh gosh I am so sorry there are just too many names to remeber but you know who you are), social workers, pharmasists, Nurse Practicioners, assistants, volunteers, child life specialists, Chaplins, Custodians and every person who had every part in saving my sons life time and time again, who cared for him, held him, read to him, played with him, played music for him, you all have been such a huge part of his life and I couldnt be more grateful for everything you have done.

Thank you to my mother who has flown out to help us numerous times, giving up so much of her own life and needs. Thank you for endless hours on the phone. Thank you for listening to me scream, whine,moan, bitch,cry, pout, cry, and thank you for never thinking that I was crazy, just extremely lost on this unbelievable journey. Thank you for loving your grandbabies like they were your own. Your support means more to me than you will ever know and you epitomize what a mother truly means.

Thank you to my brothers and sisters. Julie thank you so much for making arrangements each and every time mom came out even at the last minute and thank you for all of your texts of support I love you big sis. Shannon thank you so much for all of your texts and emails and for all of our long chats and thank you for loving your boy so much, I love you little sis. Lonnie thank you so much for all of your support and always responding to all of fb posts, you have been such an incredible big bro even though you have had a pretty rough year as well and just know I love you to pieces. Thank you to my sweet little brother Patrick who also has had such a rough year, mom always tells me how much you love your little nephew and I just love you so much. I miss all of you and wish we could be closer. I know this journey would have been a million times easier had we lived in Ohio and I cant wait to see all of you again.

Thank you to my Pops and his wife Barb. Thanks for calling and checking up and for understanding if I dont get back to you for a few days(or weeks). Thank you for your donation and I just love you guys so much and wish we could be closer. You are the best POPs in the world and I know alot of my strength comes from what you taught me way long time ago as a kid, all that persistence has paid off!!!!
Thank you to Pat and Fred my in-laws who drove out and endured their own tragedies this year, who have helped us financially in so many ways, who are the most dedicated grandparents, and who take over the household, cooking, cleaning, organizing, revamping our yard and garage, fixing everything in their path(especially Fred). We are more appreciative then you will ever know and adore both of you. You are two of the most amazing generous people I have ever met and am so grateful that you raised such an incredible son. Thank you so much for that!!!!

Thank you to Chads Brother Brad and his partner Juan who flew out and watched their niece and who surprised us all by creating the most unbeliveable playroom for Viola. You guys did so much while you were here I thought maybe Fred had flown back out lol. Thanks for being the best Uncles ever and the best brother in laws a girl could ask for.

Thank you to my beautiful friend Karen who flew out and sacraficed so much to do so. Thank you for giving me my hippy cow pow back right when I needed it the most. Thank you for dropping everything in your life to be in mine. I love you so much Karen, you are my little shnarkle pow sparkle friend!

Thank you to my dearest friend Susan who has threatened to fly out on numerous occasions but it just was always bad timing. Thank you for constantly taking my mind off of all of this and regaling me with your own crazy life. You always always know how to make me feel better no matter how horrible I feel. Thank you for letting me cry on your shoulder and calling me. Thank you for always remembering to send me and the kids gifts, and especially sending past momentos that you come across, those are always a lark. I love you so much and thank you for being my best friend for more than 21 years. You are the best!

Thank you to my Uncle Mike and his family. I so looked to you for strength knowing you and your family were going through their own hell, and I so enjoyed our back and forth bantering, and cussing missives, and truly understanding what it is like to go through something horrific and terrifying. I love you muchos!!!!

Thank you to my dear dear friend Johanna. I adore you. You have been with me every step of the way and you have helped me so much with watching Viola, to gift giving, to just being there and listening to me when I needed it the most. You are definitely a keeper and I cant wait until things settle down so we can get back into doing things together more.

Thank you to my dear friend Allison, Jesse, Nicole and Josh(sorry you guys are a foursome, I just cant separate you! :) Allison thank you for calling me weekly especially in those first few fragile months. You have no idea how much those phone calls meant to me and how much I needed someone to reach out to me especially since I was on major withdraw mode. Thank you all of you especailly Jesse for helping move that monstrosity of a playscape into our backyard. You have no idea what an enormous gesture that was especially since all of you had so much going on of your own. Only dedicated friends would help out with such an insane project. Thank you Josh for your Raki's and healings and Nicole my little brown recluse, I have felt your love from miles away. I have always felt your presence and power and I know that Thurston benefitted immensley from your energy. You are an amazing group of people and it is a priveledge to have you in my life.

Thank you Janet Yudichak for sending me the most amazing vintage tea set. That came very early on in our journey and I just couldnt believe the beauty that someone I had only met once(however connected with instantly with our love for antiques and all things vintage) would go out of their way to send me something so beautiful and lovely and antique. That set will always remind me of the beauty that abounds in the human heart. I cant wait to be able to give you the biggest hug ever!

Thank you to tom Yudichak, chads childhood friend, his beautiful wife Julie and their pretty darn incredible son Justin. You guys have given us consistent support throughout this whole ordeal with gifts of homemade yummy bread, cards, a wonderful frame, and just some really great nights where both Chad and I could just feel that life was a little normal even if just for a couple of hours. We love you so much and just appreciate having you in our lives, especially since I love playing board games and you are one of the only families that do toooooooooooo!!!!

Thank you to Tom's brother Bill for sending us gas cards, you have no idea how much that helped us. That has been one of our biggest expenses actually being so far away from the hospital and going up two sometimes three times a day takes its toll(sorry environment, I had to see my son :)

Thank you all of the Ronald Mcdonald House volunteers, especially you Peggy who have constantly inquired about Thurston. You all are amazing and I cant believe you find time in your day to volunteer. You have no idea what a haven you have built for us families in need and we really appreciate all you do.

Thank you to my dear dear friend Janut and Jim. What an amazing amazing gift you have given us by not only coming out once for three weeks in the deadest heat of summer, but coming out again for another three weeks to help us out. The companionship both Chad and I receive from you two is immesurable and it is incredible to hang out with two amazing people we have so much in common with. Thank you for buying all of our groceries and cooking us the most fabulous meals and watching Viola all day while I visit with Thurston. You two wont be able to get rid of us now!!!!!!!

Thank you to my amazing and dear O'mammas, each and every one of you have been there for me either by encouraging emails, offers of babysitting, setting me up with amazing meals, phone calls, gifts, visiting me in the hospital, and of course for all the amazing donations to our auction and for spreading the viral word all over facebook. You guys continue to hold me up and I want to thank all of you for everything you have done for me.

An extremely and unbelievable thank you to Melanie for organizing the most amazing auction. I just dont know how you did it all and cant believe the amount of time, donations that you put into it and you have no idea how much we appreciate it, even though you are so busy. We love you immensely and cant wait until we can just actually hang out without that at the forefront of our conversations. You are an amazing lady!!!

Thank you for all of the people that donated and bid and solicited for our auction. I am in the process of trying to make birth announcement/thank you cards and I hope to send them out sometime in the new year. I cant believe how many people donated time and money and how unbelievable and successful the auction was and how much it will help us out. We just were blown away by all of the response. Thank you so very much!!!!

Thank you to Donna R , Devon, Pey Pey and Emby and Steve for helping me out with Viola and for being so amazing and supportive through this whole thing. We miss you guys so much and would love to see all of you soon.

Thank you to my dearest dearest Inspire friends. I truly dont know what I would have done without you. You ladies are amazing and especially to my sweetest and dearest friends Jennifer and Anais, two parts of my three amigos, you continue to give me strength daily and my heart aches everyday for Benjamin and Natalie. I love you guys so much. Also to Rhonda, Courtanay, Florinsmom, and Mygirls mom. You guys have been amazing with all of your advice and support let alone for your unbelievable gesture and I am forever grateful to you.

Thank you to my built in NICU family, Jen, Michelle, Beverly, Candace, Questa and the many more families that I met. You guys amaze me everyday with your strength and it has been great to relate to people who have gone through it all. Thank you Jen and your neighbor who donated all of those canned goods and their preschoolers who donated, I cant even believe what a generous and thoughful gift and we just cant believe how total strangers would be so inclined to give so much to us. Thank you Michelle for giving Viola something to look forward to once a week besides hospital visits and for helping out with her costume. Your dance class has been amazing for us. Thank you Bev for your future picture date and I will get with you soon and thank you Candace for all of your words of encouragement. Thank you Questa for the picture of your little tater it is hanging in Thurstons crib. I look forward to the day when we get all of our babies together unfettered by cords and wires and oxygen tanks(course that might take a couple of years for us) but it will be fun to watch all of our preemies grow up together.

I still have a long way to go and this list is in no way in order or complete and I will continue to update it but I must clean the house now. Love everyone and keep coming back for the updates
Thank you I think I will put the date next to the last update so you all know when I have updated the list.
December 31st 2010

Update #3 January 3rd 2011

Thank you so much Hand to Hold and its founder Kelli Kelley. Thank you for all of your calls and listening to me kevetch!!! Thank you for forming such an incredible organization and wanting to help others through this very hard journey. And of course, thank you for creating the preemie power photo contest, that was truly one of the only times that Thurstons life was all about him and how cute and wonderful and strong he is and not about the hospital life. That really got me through a good month and a half and it was so much fun for all of my family and friends involved. What a great and fun way to raise preemie awareness. You are the cats pajamas

Thank you to my very dear friend Greg and his wife Leilani. They have also had a pretty rough year and yet still have found so much time to help with our auction and to send emails and phone calls of encouragement. We miss you guys and hope one day when Thurston is better, that we can fly out and take a very long vacation, ALOHA!!!!

Saturday, December 18, 2010

In Dreams.......

I remember this time last year. We were decking the halls, laughing, smiling, singing, and most of all dreaming. Dreaming about having a new baby in our lives, dreaming about Viola's first reaction, how they would get along, dreaming about new adventures, playdates, library story times etc. When you are pregnant, you cant help but envision you and your babies future. I dreamt of this time of year and how old the new baby would be and how exciting our lives would become. But those dreams faded and had to be replaced with new ones. I was talking to a friend the other day of how many times this year I have had to reinvent those dreams, reinvent myself, reinvent Violas life. I can honestly say it is probably more than all the reinventing I have done in my entire life.
When I was in my 20s, it was definitely not a burden to do that, it was fun and freeing and wild and promising. Early on, I wanted to be a private detective after having read one too many Nancy Drew novels. Having always loved the early 19th century, I envisioned myself living in New York city, with my Nancy Drew outfit, walking into a classic movie theatre playing a Buster Keaton revival series and meeting my one true love.... yes I was a strange 11 year old kid I was. Then in my early 20s I wanted to be an Egyptologist/archeologist. I have always loved the past and I thought I would combine my love for private investigation with the past and try to solve mysteries of long ago. Then I fell in love with literature and decided to make my ardent passion of the 1920s and 30s into reality, and studied silent film and thought I would make my way into becoming a silent film preservationist. Then many many things happened along the way.
The funny thing is though that once I got married and became a mom, I stopped that I mean, I didnt feel the need to reinvent myself anymore. I was in pure and unadulterated other words, I was finally living the dream life. I didnt want anything else after that. So when I became pregnant, I just kept thinking that my beautiful wonderful dream life would continue but with another beautiful child and I would continue all of the mommy things that I so loved doing with Viola, breastfeeding, co-sleeping, singing etc. I envisioned Viola and the new baby doing all of the things I had done with her, library, gymnastics, playdates, bathtime.....I just thought life would continue on the beautiful spectrum that we were on.

Then when things started to go downhill with the pregnancy, every other week I had to keep reinventing my life and my daughters life. Then when we thought Thurston was out of the woods in May, when I began blogging, I set up the nursery upstairs thinking that I could still have that same dream, but things just kept getting more and more complicated. So I accepted that and reinvented the dream once again, changing our lives around thinking well we wont be able to go too many places but I envisioned lots of arts and crafts and there was still bath time etc. since we would all have to stay indoors and hole ourselves up for the winter.
But that dream didnt last long either. Then realizing that Thurston just might need to either stay in the hospital indefinitely or get a trach I realized that my daughter had spent the better part of the last year living life outside of the dreams I had for her. I then had to reinvent her life again. I finally gave in and realized the only way she is going to have any stability is to go to preschool full time, no matter what happens to Thurston. This pains me so much because I so badly wanted to be with her as much as possible these early years, they grow up so fast and I just so desperately wanted her to stay home with me and with her brother. So the dream I first had when we moved here to be a full time mother and stay at home with my children died. But I couldnt just let her life squander away because of our situation, I had to give her an opportunity to make her own dreams too.
As far as my son goes, I have to do what is best for him. Chad and I have talked this over until we are blue in the face. We realize that he is wasting away in the hospital and that there is no way we can even start our lives until he gets home. And the only way to do that is to give him the operation that scares me to no end, that will make our lives extremely complicated, that could cause issues later on, but I think right now we just have no choice. It pains me to be away from him, it pains me for many other reasons I cant go into here, it pains me to know that we have not been a "family" for almost 10 months now, torn apart, never really together. I must reinvent my dreams once again. As this experience has been nothing short of a nightmare, I will try my hardest to rise from the proverbial ashes like the phoenix and hope that one day I can live the dream life once again.

Monday, December 13, 2010

I wish I had a river I could skate away on......40 weeks and counting...

It's coming on Christmas
They're cutting down trees
They're putting up reindeer
And singing songs of joy and peace
Oh I wish I had a river
I could skate away on

Wednesday, December 8, 2010

Honestly OK.............Life SUCKS!!!!!!!

i just want to feel safe in my own skin
i just want to be happy again
i just want to feel deep in my own world
but im so onlely i dont even want to be with myself anymore
on a different day
if i was safe in my own skin
then i wouldn't feel lost and so frightened
but this is today and im lost in my own skin
and im so lonely i dont even want to be with myself anymore
i just want to feel safe in my own skin
i just want to be happy again

yup that about sums it up.......

Too much has happened and I just dont feel inspired to write really. In short Thurston made great progress until two days ago. He was actually slated to go home today but somehow his o2 needs went back up. They have talked about traching him again or else he will be in the hospital indefinitely as it is just too risky for him to be home without one. I know for some of you this seems like an easy decision but the trach is not without its complications and/or risks. He actually could do worse with one or to be quite honest, he could die from complications because he is so fragile. We are exhausted, emotionally, physically, financially. I am at a loss. He is 9 months old today and trying to balance his needs against Viola's needs is daunting especially since now he is 6 months old adjusted. He is significantly far behind in every and all skills. All he does is sit in a hospital bed, I guess what can you expect . I am sick with grief, with guilt , with angst, with apprehension, with depression, with anxiety and the only thing holding me together is my husband and my daughter who I cant comprehend are doing so much better than I am. Chad gave me a very long pep talk last night. He saves me everyday but I am still just at a loss. I hate being in this postion, where we have to weigh the lesser of two evils: an operation that could cost him his life but MAYBE get him home sooner(um yea I know of several kids who got trachs who actually had to be in the hosptial a lot longer because of complications from the trach so its not an absolute guarntee to get him home) or let him rot in a hospital bed for the next 6 months and wait for his lungs to get to a point where he can be more stable at home. I am full of hatred right now, I am feeling defeated, I am feeling anger and sadness and just wish that asshole was watching where he was going before he hit me when I was pregnant and destroyed any sense of happiness and normalcy that we had. I hate him for what he did. I hate that my daughter and son are living at a hospital. Please dont give me a pep talk right now. No one knows what this is like unless you have been there and for this long and have this many unknowns. It is pure and utter torture and you really truly feel like your lives will never be normal, like life is passing you and your children by. I wish we could just go and enjoy the holidays and get a tree and decorate and be jolly but you just cant have any kind of normal under these circumstances. Life really sucks right now and screw the glass half full bull one can ever understand what an absolute nightmare this has been. Trust me I wish we could have been those lucky preemies who got to get off of oxygen early on and go home but we are very unlucky and Thurston the most unlucky of them all. My poor son just has no idea what it is like to be free and I am beginning to wonder if he ever will. If you really want me to be honest then OK...... life sucks!!!!!!!!