Scared. Stiff.

I don’t do surgery. Jeff does surgery.

I have horrible thoughts when he is wheeled away…veering down the hall to go under the knife. They took him away 30 minutes following his grandiose entrance into the world. The ambulatory team took him before I was even made aware of his diagnosis.

That is what I remember and it was horrid. I received his diagnosis over the phone (not even a land line – my dad’s mobile phone) from a revolting neonatologist. The man should not have the title. That’s what I remember.

I can handle all of the post-operative care in the world, but I don’t do surgery.

The tubes.

The wires.

The sometimes inept staff.

It does not bother me.

But watching him going down the hall, out of my sight…it terrifies me. My control is gone; ripped away and he’s in their hands.

I know. Trust.

It is so hard to trust. Too many mistakes, misdiagnoses, etc. have been made.

So, Jeff does surgery. I come later.

Friday, I’m “doing” surgery. For some odd reason (damn that instinct) I feel the need to be there this time.

God help me, please. I can at very least trust in a higher power.

The tree - among other things

I’m trying to comprehend just why I am so sad as of late. I am surrounded by such beauty.

Case in point: the tree.

I love this tree and each year I pose with the kids and the tree as it blooms. Last year, we had horrid torrential winds and the dear tree lost its flowers before the yearly photos were taken. Yesterday was a gorgeous day, albeit a day where rain was forecast at 80%. Morning rain and afternoon glory. All the glory that spring is supposed to bring.

Isaac and I had our yearly tree photos. Elliot stayed inside. Elliot likes it inside. He is safe inside and I think the association of going anywhere is analogous to going to the doctor / hospital / emergency room is present. In his brain, the association, the sad association, exists. He now throws fits when we get in the car, when we step outside, when we go to grandma’s for Easter. Again, I go back to autistic tendencies. Perhaps to social anxiety disorder. It is not people he is afraid of; it is places. Just as long as people come to us, in our home, he’s okay. He hugs, he maintains eye contact, he plays, he approaches, he loves…anyone who comes HERE. But, step out of the safe zone and all hell breaks loose. I cannot push him in the stroller at the grocery. I must hold him. I had to hold him most of the day on Easter. Heaven forbid that I would have attempted Mass.

So, the sadness. I’m scared and sad for my boy. His surgery approaches. His life of just over two and one half years has consisted of surgery, of procedure, of doctors now who say find another group because your mother is “difficult.”

Will my life now be full of people who find me to be difficult?

Difficult because I advocate for my son who is now so petrified of the world that he cannot step out of our box; my boy who cannot even fathom to enjoy the tree in all of its splendor?

Indeed, I am surrounded by beauty. But, now I struggle to enjoy it for what it is because a part of me, my beloved Elliot, cannot.

I need to help him. I have vowed to help him. I am on this earth to help him. I keep saying that “if you don’t fall down, you cannot get up.”

I suppose I am sad because we keep falling down. “Up” has to be somewhere in the distance.

Bucket boy~

Elliot has been perpetually enthralled with this tub at my mother’s. I finally let him get in on Easter. He looks like one of those Anne Geddes babies!

Sweet boys of mine...

May Day will be a good day.

That’s what I am telling myself.

I have forever loved May Day. Spring has sprung!

Mom and I used to make the beloved baskets. You know; the ones with Dixie cups and pipe cleaners: popcorn in the bottom and M&Ms on top. Nora and I go overboard with our May Day baskets. Only young once, unless you’re me and feel like a teenager in an almost 40-year-old body!

But on this May 1, I might just age another ten years. We repeated Elliot’s chest exam yesterday. He’s cleared for surgery.

This May Day, instead of handing out goodie baskets, we’ll remove Elliot’s gallbladder, biopsy his liver and complete both an upper and lower endoscopy. The surgeons, of course, are also suggesting a gastric feeding tube. “Perfect timing,” they say. I’m more than a little bit leery. Eenteral feeding? Well, he does swallow, so we may be creating a monster…

The kiddo does not eat anything solid; he won’t open his mouth for the spoon, the cracker, not even a lollipop. He generally takes his Pediasure from a baby bottle in stride, but do I provide him with a crutch so he does not feel the “need” to ingest anything?

Personally, (again, momma’s gut instinct) I think that Elliot does not eat solid foods because he is simply in pain. I mean, he’s dealing with an abundance of gallstones. He HAS to be in pain. All adults that I speak with that have suffered with gallstones speak of pain. They speak of appetite loss. They say that in a nutshell they just feel horrible.

I know; we have gone down the road of oral aversions based upon cognitive delay, habitual behavior, even autistic tendency. And sure, Elliot does indeed exhibit some behaviors that are found on the autism spectrum. “He has not LEARNED to eat.” Eating is a learned behavior. But, will he learn if I hook him up to a feeding pump? I don’t think so…

So, what is more important: immediate weight gain or long-term solutions? At a loss.

May 1 is the day. Risk is plenty. But, considering that they have opened up my boy’s spine; he’s kicked the hell out of much worse (you all know the details), I think we’ll be fine. The surgeons are smart. You know me; I can no longer tolerate foolishness.

Nora and I will extend the holiday. May Day will be Sunday for us! Elliot will be home; we’ll have much to celebrate.