A Momma's Emotions

First I want to start by saying that Lucy had an AMAZING day.  She did great in PT, she has a normal constitution and her attitude was better today.  Another Dr. B came in this morning and told us that they would be removing the drain from her back by mid-morning.  It wasn't 5 minutes later we realized that it had come out on its own and was laying on her bed.  OOPS!  Oh, well.  That just meant that there would be no scary doctors hovering over her trying to remove it.  Thank you Lord!

So, here's the plan.  Drain removed and now it's time to wait.  There's that horrible 4 letter word again.  WAIT.  You would think that this would be getting easier, but just the opposite is true.  The more progress I see her making, the more antsy I get to move down the road!  What we are looking for is a build up of Spinal Fluid in her back or head.  So far so good, but it can sometimes take several days for you to start noticing a problem.  But, everyone here agrees that at some point we've got to bite the bullet and move on with treatment.  If everything continues to go well, there's a chance we could be at St.Jude in a day or two.  If we get over there and Lucy starts having swelling problems, then we will have to come back to Le Bonheur to have a shunt put into her brain.  Please pray specifically that God would continue to heal her back and she will not have any buildup of fluid. 

I am trying to stay guarded, but I have to admit I have my hopes up just a little that we might actually make the move this time. 
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When I went to Target yesterday I was very weepy.  I cried a lot in the car and even cried in the store.  Today I had lunch with my friend Sara.  It was a great lunch and a nice reprieve from the hospital.  But during the whole lunch I was very weepy again today.  I think just being out in the real world was a slap in the face by the huge, ugly hand of our new reality.

You see, inside these hospital walls I feel protected.  Everyone on the Neuro floor is in the same boat.  Whether or not they are dealing with cancer is inconsequential.  Everyone is mourning a child's illness.  Every one's life up here has stopped just like mine.  There is no reminder that "normal" children are running around outside, playing, going to school.  We all live in our own little world where almost every thought revolves around sick children and medicine.  The best way to explain it is when my college roommate Jennifer came to visit today I was in the hall talking with another family that we have met here.  Their 2 year old daughter has Medullo and I introduced them to each other.  While Jennifer was moved to tears by this little girls' situation I have almost become numb to it.  How can that happen in just 20 days?  I guess because it is all I see every, single day.  And this is what life will be like for the next 6 months.

I worry about my return to the real world and then I worry more about Lucy's.  I know she is resilient and will bounce right back, but as a mother I worry myself sick about her comparing herself to others for the next few years.  I don't know if I will be able to handle it when her hair starts falling out.  The very thought of someone staring or another child making a comment just breaks my heart in a million pieces.  She has cancer and this is all part of it I know.  But knowing all this still does not make it any easier.  As we prepare ourselves for the move to St. Jude I am trying to ready myself for the battle ahead.  At St. Jude I will be surrounded by mothers of cancer children each and every day.  At home, I won't.  I guess it's time I put my big girl panties on and deal with it.  I've got to be strong for Lucy and set an example. 

As I told my friend Amanda the other night, life will never, EVER be the same for our family.  We will always be looking over our shoulder when it comes to health issues.  We will always have a child that was affected by cancer and will never take that fact lightly.  Every headache, every fever...I know will send us reeling.

I also know that we will never, EVER be the same in many good ways.  I think I will forever appreciate all the little happy moments life has to offer. I don't think I will ever be tied to my calendar so closely again.  What my kids wear, what their hair looks like; none of that matters anymore.  There will be lots of kisses and lots more hugs around our house.  Birthdays will be celebrated a little longer and Christmases will mean so much more.  I know I will enjoy the sun a little more, spend more time outdoors and every moment I can with my children just enjoying life.

While I wrote most of this entry, Lucy was asleep on the couch with her head in my lap.  What a precious moment we shared.  That is what I am taking to bed with me and I will look forward to the moments I have with Jack and Ella tomorrow afternoon.  That's what this life is all about.  Thank you dear Lord for today's victories.  Tomorrow may not be as good, but I won't worry about that right now.  My baby is resting well, without pain and with no worries at all.  That's good stuff!