Saturday, April 19, 2008

It's my normal now ~

Taken on my drive in the country

Some people have asked me, "Why are you still working?" Or some have made comments saying they don't know how I am doing it; going to work and running to the hospital afterwards. Well, I will tell you... work is the only "normal" in my life right now. Besides my faith, it is consistent, reliable and never changing. I need and crave it. I know what is needed from me and what I can expect back from it.

My boss has encouraged me to take some time off and has let me know that I can whenever I need to. Just the thought of staying home and doing this non-stop makes me feel like I could go to...a very cRaZy place. We only have six weeks of school left... if I need to take some time off when I really can not handle this schedule of work and taking care of Charlie anymore, I know that I will have my time to take off in reserve if I really need to. So far it works. My boss has also reminded me that I haven't taken one day off all year, I admit sometimes it is tempting... but, I have to be honest, work is also my break from all of this craziness and I look forward going to work. I can not do this 24/7. When I did this with my dad, I had my sister and Nina helping. We had each other. With Diandra's schedule; working two jobs, school and studying, she tries to help as much as she can. Bless her heart, there has been countless times she has had to ask her professor (they know the situation) if she could take a test a day later just so that she could study. She has also been a sounding board for me as well (I also worry about sharing so much with her, I want to be her mom and protect her as much as I can. I think sometimes that is why I feel like I am doing this alone to a certain degree). With situations like this, everyone does what they can. I don't want to sound like no one is helping, because that is not the case. Family have gotten some things that we have needed and our friends have also come to the hospital ordering me with a whisper to go and take a break... doing what I am told, I find myself not knowing what to do and just walk around the hospital, going to the chapel to pray or calling a friend with a good ear. Really... Charlie wouldn't want anybody else but me and I want to be there for him also. It is just hard seeing someone you love go through this... I really want to be there for him, but I will tell you... sometimes he just isn't very nice. He has his angry stages and rightly so, I think when this happens, 'but not with me'. It is hard to take at times and I am learning to pick my battles with him, of what I can take and what I can not. I haven't always understood the saying, "You always hurt the ones closest to you." I am not saying that I am not guilty of this, I am sure I have had my share of that saying. Although, I also believe in "self-control." When I see him lash out at his cousin whom he works with, his daughter and I, and then a nurse will come in and he is sweet as pie... I know that he can control his anger with this situation. It makes me think of someone ranting and raving in the house and then seeing a pastor drive up and then change your whole attitude. Hmmm ~

I need and want a break sometimes. I want and need my "normal" and that is why I do it. Is that bad of me? I do struggle with feeling guilty when someone asks me these questions. I am just doing the best I can... then I wonder 'Am I?' For goodness sakes! He is the one fighting for his life. And then I have to tell myself, "It's not about me!"


  1. I can see how work can be something to hang onto. Everyone needs a baseline that they can measure normality from. As long as you can use work as an escape, but know when you need to escape work, then I can't see anything wrong in that.
    Getting angry is just a blokes way of dealing with stuff. We don't mean it and you probably realise that. If we are sometimes cruel or nasty in these sorts of situations, please don't take it to heart, it isn't real anger but misplaced frustration. We lash out at our loved ones because we know they'll understand why we need to, when a stranger may not. If you can redirect that anger to the battle that needs to be fought, then those energies are put to good use.
    Wishing you well and keep a tight grip on your friendly 'normality'.

  2. Thank you barkfoot ~

    It helps to know this from a man's perspective.


  3. Beautiful photo of the bridge. I just was reading on Rob's blog from the link you posted. It's interesting to me that both your blog and his are different yet they offer the same spirit, the same feeling of hope, warmth, and love.

  4. Love and understanding will calm you down, great to meet you here and great blog

  5. Here is a bad-but-good thing: some day, between work and the hospital, take some time and visit a place or two you and Charlie have been together and had fun.
    Take pretty pictures/wild flowers to him in the hospital and relive some nice memories. I think that your photography is also a normal in your life.
    You are right about work being essential sometimes. You seem to be taking good care of yourself honey.
    It is about Charlie but no way can he do it without you.

    Love you,
    ♥ ♥ ♥

  6. Coming from the direction of often being the patient, I can tell you that I was glad for J to have his work.

    Sometimes I feel consumed by Lupus and J is freshly there for me because he gets to escape from the disease. Work became his refuge and the people there, his support. You are a beautiful wife and mother. You are doing a stupendous job and can feel good about being the perfect caregiver to him.

    I love you sweet girl,
    xox darlene

  7. You are doing what is "normal" for you to do and there is nothing wrong with that! I use work as my escape sometimes we all need to. but what I know for sure about you is you are giving the best of yourself and Charlie knows that!

    always remember i am here for you

    love and hugs my sweet