Monday, October 12, 2009

Reflections from home.

Several weeks ago I found out that Rachael probably qualifies for Make A Wish.  My reaction to that was, "No.  No, she can't."  My friend put it perfectly.  She said, "You never thought you would have a 'Make A Wish Child'."  Exactly.

I've had several opportunities since finding out that she might qualify to look into it but haven't done so.  I can't even pinpoint exactly why I just knew it didn't feel right.  After our experience in Pittsburgh though I made a decision that we would go ahead and take the good with the bad and I would look into it and today when we went to MD Anderson (yay our hospital!) I did just that and they should be contacting us in a few weeks.  Our social worker said that she absolutely qualifies because of her diagnosis and age.  She was really reassuring and said that there is a bit of stigma associated with Make A Wish that a child has to be terminal to qualify which just isn't true and she said many parents don't take advantage of it because they don't want to think of their child as a "Make A Wish Child".  Has she been listening in on my phone calls?

Driving home today I was reflecting on the last few months and I can say that I am now fully out of the denial phase.  I think many things contributed to this but there are three things that happened this week that have changed my perspective on my daughter's diagnosis.

First, we had our first true complication. The procedures and pokes and pain and cries before this week were all pretty predictable and sort of expected. It was within the range of normal for what she needed to have done and though they were difficult, once they were over, they were over and she bounced back. Last week was different and it was so difficult and unfair and hard and at some point during the fevers and hurt and worry I decided that Rachael would get anything good she could out of this experience.

Second, a woman at the hospital today had a hat on that said "Cancer Sucks".  I love that and have said it many times.  There are those that think it's crass and we shouldn't say things like that but it TOTALLY DOES SUCK!  Acknowledging that it sucks gives us a sense of power and freedom that I can't even describe but it's sort of like when Rachael doesn't want to be told that she is brave because she isn't feeling brave or like giving her the freedom to scream at the top of her lungs when she is in a whole lot of pain.  IT SUCKS!  IT'S BAD!  But here's the thing.  That's not the end of the story.  The woman with that hat said something that has been repeated to us several times.  It's temporary.  It's not forever.  The treatments that we are going through are lousy and disruptive and generally sucky but our real life is awaiting us at the other side.  It was like an epiphany today.  Just because this is temporary and her prognosis is pretty good does not make it suck any less.  Just because we believe and hope and pray that all the cancer is gone from her body does not mean I have to deny it was ever there.  Just because the treatments she will need to endure are (hopefully) preventative in nature does not mean they are not as hard as those treatments that are curative.  Even though we expect to be okay, CANCER SUCKS!

My last shred of denial was stripped away as I was driving home tonight while I was reflecting on our journey so far.  It's hard to put it into words but to oversimplify my thoughts... our life has changed.  I no longer feel like the same person I was a few months ago.  The transformation was slower but it's nearly as profound as the one I had between before having my first child and after.  I know in the early days, this change will be more apparent and as time goes on I will go back to "normal" even if it is a new "normal" but it will be different than Before.  Rachael has changed, though we won't ever know how because she is so young.  But her life will be forever affected by her diagnosis.  Tom and Marc are changed even if I'm not even sure how yet, but there are differences.  Many of them are good and surprising changes but ones that would not have happened if not for this journey.

In many ways I feel very lonely on this road even while we have a crowd of supporters lining the streets for us.  There aren't many who join us on the actual path though and I feel a deep need to draw close to them.

I want Rachael to make her wish and participate in that club because, whether we want it or not, we have already joined.


  1. You're amazing! What a great mother!

  2. Don"t know what to type, but want you to know we are following and ready to step in whenever needed. (Also, I have a present that a lady @ RLF made for Rachael.)

  3. Hi friend. :0)

    While I know that all things effect people differently and this is a very different scenario... but the best I can relate to that feeling of "being changed"...was when my mom died a while back. It was the only time in my life (since becoming a mom myself) that I felt truly changed by something happening. My thoughts, my feelings, my outlook on life changed and I'm not the same person anymore.
    it sucked

    I trust Him in your changes for you and your family and I can't imagine how hard all of it is. I know we're not truly taking this journey with you but even I felt a bit of an awakening when Rachael got sick on your trip. Even to me it was sort of a slap to how real and life changing her situation is.

    I am glad you're going to take part in the Make a Wish. It's not just for Rachael but it's for the whole family and all of y'all deserve a wish to come true.

    with hugs

  4. Hey, melasuckanoma should totally qualify Rachael for Make a Wish just because of the crap she has to go through. I look at it not that she is terminal, since we know she is not, she is fighting and she is winning! But also, she's a kid who shouldn't be worrying about this type of stuff. And just for that, I am happy that Make a Wish might be able to do something special for her.

    We have a high school kid in our town that had leukemia about 3 years ago. He is in remission and doing wonderful. He and his family have been able to make some very special memories with programs like Make a Wish.

    I "wish" you the best in helping get this process going.