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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!!!!!!!!


  1. No pep talk, just love.

  2. It does suck. It really does. There are no adequate words for this experience and no way to dress it up with a silver lining or flowery words. This is not how life should be. Much love to you and your family.

  3. Donna, I am so sorry to hear this. I just want you to know that I think about you guys every day. I can't imagine the torment that you must be going through. Sending you thoughts, hugs, love, and hope that things will soon start getting easier for you all - Michelle

  4. I am so sorry that things are still so difficult. I cannot imagine how challenging this must be for you all. We think of y'all and pray for you often.

  5. I think about you every day. I'm so sorry, Donna. I am praying that things turn around for the better for your family. Love-Stacey

  6. Im so sorry Donna. I think about you guys all the time and am keeping Thurston in my prayers. Much love to you!

    ~Amber Kazmir

  7. Yes, I hear you, I have been there and I felt exactly like you do right now: life sucks sucks sucks!!! ...and it does at the moment for you big time, no question. But there is no way out, you will keep fighting, because that's what Thurston is doing and that's what we mothers do... we have no choice! You are a strong woman and you have every right to be mad at the world, but after being mad you come back to be at Thurston's side and fight together. And he WILL get better. Once again, I have no advise on the questions whether to trach or not, but once he has overcome his lungs issue, he will be much better. Don't even worry about his development at the moment, he will catch up. Think only one day at time, that's all you can do. And just let your anger out like you did, that helps too.
    I'm thinking of you and your family and my prayers are with Thurston every day!
    But hug,