Saturday, September 4, 2010

Scattered Reflections

I've been going back and reading all my old posts and it is very strange.  I'm feeling a lot of emotions that I would not allow myself to feel then.

That's not quite right.

It's not that I wouldn't allow myself to feel... it's that I could not feel them.  My brain literally did not allow me to feel weight of what was happening those first couple months but now when I read back on it my heart hurts.

We're coming up on one year No Evidence of Disease.  A wonderful milestone that I plan to celebrate.  About 11 months ago I wrote:
It’s hard to put it into words but to oversimplify my thoughts… our life has changed.
 A year into this, how has life changed for us?

1.  I think about the sun every single day.  I don't want to say I'm paranoid but my former self would have said I'm paranoid.

2.  I no longer think "15 minutes without sunscreen is okay."  As a matter of fact, with the sun being so hot this month I get nervous about the sun she gets standing in the shade and I would not let Rachael go 5 minutes full sun without it.

3.  Rachael wears a hat every day.  She wears it in the pool.  She wears it to the beach.  She wears it in the shade.

4.  When she says, "I'm itchy," I assume she has a rash.

5.  When she says, "I have a tummy ache," I don't question her, I just give her Tums.

6.  When she says, "I have a headache," I give her Motrin because I know it works better for her than Tylenol.

7. At least one of the three previous events happens at least every other day.

8.  I don't care about "Perfect Attendance" anymore.

10.  I know how to stick a needle in my daughter and manage to do it every week without passing out.

10.  I ache for other families that are experiencing pain.  I might not know exactly what they are going through but I know enough now.

11.  I have physically felt prayers being said on my daughter's behalf.

12.  I listen to music differently.  It's more powerful now.

13.  I have met some of the strongest, most amazing and resilient people imaginable.

On that note, please pray for my friend Jeanne.  My heart is so heavy for her today that deep breaths only bring tears.  She has already been given a supernatural strength but still... still... she needs more.  She tells me often that there is strength in numbers and she needs numbers.  Number and numbers of people praying for her.  Would you flood the gates of heaven with prayer for Jeanne today?


  1. Yes. Please pray for my nephew also who has a very serious and mysterious genetic disorder that we are still learning about, but his life is a day to day thing a lot of the time.

  2. I'm so sorry. I will absolutely pray for wisdom for his doctors and peace for his family.