The Last Supper

Here we go again. Smelly Mom in yesterday's clothes, because I was hoping that we were NOTgoing to have a sleepover at the hospital. Didn't want to jinx it or just too tired to pack my own things, I'll never know.

How do I keep a smiling face when my kid is gagging on a ph probe? How do you give the perfect goodbye as they wheel your child off for the second time in less than 48 hours? What do you tell your kid when they are telling you they are hungry and can't eat? What kind of cake do you make for a 5 year old's birthday when they eat out of a tube? Do you make a cake for your 6 year old who happens to share the same birthday? How do you split time between a sick child and healthy ones? When will we catch a break?

Here is the list of possible answers:

You get what you get and you don't get upset.

When life gives you lemons, make lemonaide.

Things could be worse.

Be happy for what you have.

God gives you what you can handle.

What doesn't break us, makes us stronger.

Last night I ordered dinner for what I wasn't aware was a 'last supper' for my soon to be 5 year old, Adelina J Bean Calvanese.  She wanted pancakes, but dietary restrictions weren't corrected in time, so we were stuck with PBJ and soup.  The same meal she ate for lunch.  I woke up to order said lovely pancakes at 6:30 this morning and the news was broken via the lady on the other end that "nothing was to be taken in by mouth."  Dam, now I really missed those pancakes.  I see why kids love them, but I know the only reason this one does: her big sister likes them.

Sisters are wonderful to have, so I'm learning.  The only time she smiled yesterday was seeing two of the three chubby cheeked siblings' faces on the computer.  They spent the entire time making silly faces and funny noises and when they disconnected, Adelina's smile did as well.

So at 2:30 today, a feeding tube will be placed into her lower intestine to try to help correct something called "dumping syndrome" and to anticipate any biopsies that come back abnormal. Dam you PBJ - you should have been pancakes.  We were like apostles having no idea we were sharing our last meal together.

We get by on the support of our family and friends.  The people who drop everything and anything to help us when we need it and the ones who give us hope through their kind words.  It's been my lifeline and my rescue boat for what seems to be forever.  There isn't a second that we don't look at her and think about how far she's come and how much we miss her brother and sister, but the only face we let her see is the one with full attention and love.  My oldest child who is "afflicted" with a communication disorder has taught me much about communicating through feelings and not words.  I use it daily. 

So today, I'm going to stop asking silly questions.  Here's a list of better answers to the above questions:

This is life.  It's real and sometimes real hard. 

 Spending your time worrying doesn't help anyone ,so spend it loving and encouring. 

Move forward strategically.

When it gets ugly, put on some lipstick.

Prioritize.