Tuesday, July 31, 2012

Leukemia - Depending on Others

When you have no razor to shave with.........
When the clothes you have to wear are your daughter`s and way too small, or bras are the emergency back-up ones when there are absolutely none left.........
When you are ready to run for the first time in three days and it is raining and you have no rain jacket......
When you ask the hospital staff for no white bread and they bring you only white bread...........
When your computer is at home................
When you want to eat and only have bread with meat spread...............
When you cannot go to the grocery store.............
When your daughter is in the hospital...........

This isn`t even about me. It`s about my daughter and I just want her to get better. That`s what we all want. In the mean time life is so different. I was raised to be fiercely independant and learned well. Now all of a sudden the numerous simple things I used to do for myself are impossible for me to do.

Everybody keeps saying how well we are dealing with this. I`m not so sure that is true. I haven`t said one nice word to my husband, my biggest supporter, in weeks.

I cry all the time. I`m scared. I don`t want to freak out everytime someone coughs or sneezes. My older kids are constantly being told to wash and sanitize their hands, clean-up, clean-up, clean-up. And we are only at the very beginning.

Sorry for dumping this all out there. I`m just having a really hard time with this today, but I`m going to try to stop crying for a while and maybe I can actually be nice to my husband today when he comes to visit. Things are getting better. Jemma`s fever is gone and she spent some time playing games and doing puzzles with her siblings yesterday. Hopefully there will only be a few days left like this and then maybe we can come to the hospital only for our planned visits and stays.

Six months of intensive treatment seems like a long time, but it is really pretty short in the grand scheme of time. In the short term I suppose I can deal with uncomfortable clothes and meat spread for dinner. At least I`m eating.

6 comments:

  1. It has to be hard depending on others:(. When things are out of your control, and right now everything must appear that way, it makes it that much worse. Give your husband a big hug and a kiss, I am sure he understands as he is dealing with the same things you are but in a different way. Hang in there!!!!!

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  2. I too know how it feels to be independent and then have to rely on others. What...I can't do it all? I felt guilty accepting help from friends because I thought I should be able to do it all, but after awhile it didn't feel so bad to have someone come over with dinner or take the other kids to the park.

    It does get better and the more you can lean on your support system the better everyone will feel. Hugs to you and your family, we're praying for you.

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  3. Good for you girl for voicing what is going on. We haven't been there but we can sympathize and understand why you feel the way you do. All of this is uncomfortable for you but with your strong will and stubborn Jemma you both will make it through this period.
    Love you and everyone in the family.

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  4. I'm sorry you're having a rough time. We know a boy who went through this and is now a thriving 11 year old and you'd never know what the family went through. It will get better.

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  5. I am reading your blog for a while...I am a friend of Susan and also a friend of Heike, you met her, her daughter has Leukemia too.
    My daughter Joanna was diagnosed with a brain tumor 2009 while my husband was in Iraq.
    I am reading this post and I was instantly thinking....finally...I was wondering how you can keep up with that all the time....you always sound so strong. I know exactly how you feel.... we went through the same stuff.....the hospital....I was in the first one with Joanna for 4 weeks and later in an inpatient Rehab for another 4 weeks...I had to take my son out of school that he could stay with my mother. It is a live chancing thing.....everything is different suddenly....the hospital....argh....you are sitting next to the bed the whole day.....and it is okay to talk about you....yes your child is sick...but you are the mother.....you had a live before the illness too...and suddenly...it is gone...to a point....all I just wanted to say is...I hear you...and it is okay to vent and it is even okay if you are mad at some point...mad about the illness, mad about everything...

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    Replies
    1. Blanka,

      That must have been so scary for you. I hope your daughter is doing better now. Of course I have bad days and am struggling with this cancer just as is everyone in my family. I choose what to write about and try to stay positive. The other day when I wrote this I just got overwhelmed and scared and let my emotions get the best of me. They have several times before, I just don't usually write about them.

      Julie

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