Awesome Syndrome

So after almost a month of waiting and testing out the feeding tube, we have normal biopsies and a diagnosis.  Dumping Syndrome it is.  Dumping Syndrome.  Really? What bugs me most is the name.  Dumping.  It's flat out disgusting.

I've renamed it to Awesome Syndrome.

Little wonder woman will be readmitted soon for a G-J tube that will unfortunately be another family member for quite some time.  But as I said to my dear friend this morning, "whatever.  She's here." Her reply, "Exhale. End Scene."

While we waited for results and my resilient and amazing child put up with beeping machines, tubes, tape and some crazy lady lurking over her at night while she sleeps, I figured something out about myself.

I am human.

It is a lot of responsibility to take care of a sick preschooler.  It's a ton of responsibility to manage a kindergartner with sensory disorder and speech and language impairment.  It's hard to keep up with a typically developing three year old who needs attention too.  It's painful to send a 1 year old to Grandma's house while I tend to the pneumonia I've given myself from lack of sleep and insane amounts of stress.  But it all happens at the same time and the time seems to fly.

I am human.

I woke up screaming from nightmares the night before the remembery of my son and daughters' passing.  Five years later and still screaming from the nightmares.  PTSD anyone?

I am human.

We know that we have to take care of ourselves to best take care of others, but it's hard to go get your nails painted or have that cup of coffee with a friend when it takes a mountain of people to replace you while you do it.  I smile a lot and keep busy because I have to.  I learned that I can replace the guilt of getting out of the house with giving up other things.. like laundry and cleaning ;)  I've finally asked for help from people who reach out and found that these things are better than getting my nails painted.  It gives me stress free time with my kids, which we are all entitled to.

I am human.

I'm not super mom.  I have super kids and I owe them my time and really am in it for the long haul. I also feel that I owe it to the rest of the families out there like mine to be public about my insanity because that's something I'm really good at. Making others aware that we are out there and that we are not ashamed of what we have been dealt.  Showing people that kids with disabilities can overcome major obstacles when given the right tools to succeed.  We have a lot on our plate over here, so pass the pancakes, put on some lipstick and know that yes, much responsibility lands on the laps of many mothers.  It's learning from our mistakes, accepting our weaknesses and moving on in a positive light that matters.

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.