tOugH dAy

I try not to spend too much time on here ranting about random thoughts.  Just to keep a journal of the events and cute things my kids do but today I am just overwhelmed with life.  I have really been so blessed to feel numb and at peace with the events of these last few days (is that all???6 days? it feels like weeks!).  Thursday was HARD.  I can't lie.  I drove home from the hospital that night just in a daze.  Grateful that the van has autopilot to get home ;).  I said thank you to my mother-in-law because she had been an angel and gotten my other kids fed and home and homework, spelling... all done and in bed.  I was grateful.  I got ready for bed but I couldn't sleep.  I had this pain in my heart.  Sharp and piercing.  I can't explain it.  It hurt.  I could finally breakdown and not have to be strong for Trevor and that is just what I did.  I know I eventually fell asleep because I woke up at 2 and 3 and 4 and... finally got up and in the shower at 6:30 because I knew it was going to be a long day and I wanted to get back to my baby.

I have been ok.  Sometime Friday morning I felt a peace come over me.  I felt overwhelmed with love and support from so many friends and family and I knew the other kids were all being taken care of.  I walked into the hospital loaded down with gifts for Trevor from friends and neighbors and balloons that I hoped would help.  He was sitting on his bed, SMILING, watching Disney Channel and happy. 

I really do feel good.  It really is going great.  He is being so strong and taking it so well.  I don't know why I can't stop crying today.  I guess it is because I had to listen to him crying because he is hungry all morning at the school, but not able to have anything because I didn't take a shot with us to the school.  He doesn't want anything carb free of course but I don't want to fight it either.  Maybe it is because Andrew keeps calling me from school because he is low and they can't bring him up and I don't know what to do about it.  I hate this.  I hate having to say, well can you just wait for lunch in an hour to a little tiny 4-year old.  I hate that I can't give Jared a snack either because it won't be fair to Trevor.  I hate that I am powerless sitting here at home while Andrew is suffering at school but I can't just go get him. 

Today I am grateful for artificial sweetners.  I know lots of people are SO against them but they are a life saver at our house.  My kids do good with water but being able to offer something different every now and then is so great!  Thank you to Crystal Light Lemonade today!!!  That sure helped us in our rough moment.  I am grateful for my kids.  For little arms wrapped around my neck
I am grateful for quiet moments when I can think about what is good in my life and that that can pick me up and take me on through the rest of the day.
I am grateful for tissues and chocolate because even though I can't give it to them (although Andrew could use some right now) it helps ME feel better!!!! 

One moment that has always been burned into my memory is when the dietician at the hospital almost 6 years ago labeled my child as a child with an incurable disease.  I hate those words that I hear in my head all the time.  I have two that now are labeled with that.  I think of worse things that have that label and I am grateful that while this is not curable it is totally livable.  They are healthy.  They run and play just like every other kid, it just gets the most different at meal or snack time.  It could be worse.  That is what I keep telling myself.  I know it is true.  But, somedays I just still feel sorry for myself, for them and for our family.  Today I will blame it on the snow!!! and the pregnancy :)  Can't use that one all the time so I may as well for a few more months!!!  Good thing we only have rough days every once in a while, right!?