Thursday, August 15, 2013


I spent much of the time I was taking Tera for a walk today to get her to fall asleep thinking about the best word to describe what I'm thinking.  So far that's what I've come up with: resilience.

This morning I had to take Tera in for an upper GI as the first of two procedures to figure out if she has acid reflux, a food allergy, or something else.  She couldn't eat or drink anything after midnight which fortunately works out right now because she hasn't been the best breakfast eater lately.  Now, I've had an upper GI and I remember having to drink the barium so they could do the x-ray and see everything.  I wasn't looking forward to this appointment, but I wasn't dreading it like I am the ultrasound and VCUG (not sure what that stands for) to find out if she has kidney reflux next Tuesday.

I also planned to have them to do a spinal x-ray to see if she has Atlantoaxial Instability (AAI) which is common in kids with DS.  Here is a link for more information on it.  Basically her pediatrician recommended we get one before she joined any type of athletic activity.  Since we were already going to be in Radiology, I figured I would knock two things out (by the way, the x-ray showed her spine looks completely normal right now).

They took us back for the spinal x-ray first and despite the fact that they strapped down her legs, arms, and head, she did rather well; no crying at all.  Then they called us back for the upper GI.  When we got there they told me that the radiologist wanted to do two more images for her spinal x-ray to make sure they got all the best views.  So they took her back down to the other room, took two more images, she did great, and then we went back to the room for the upper GI.  I did wonder how they were going to get her to drink the barium, but I figured it was pediatric radiology and they were used to dealing with kids.  The radiologist asked if she should flavor the barium with chocolate and if she could just drink from her sippy cup.  I said that sounded great.  So they strapped her in, her legs and head this time so her arms could be free, and then moved a large screen over her leaving little space between her and it.  She was supposed to drink the stuff while they were taking the images so they could watch for reflux.  By this time, Tera was getting rather upset, having been strapped down already and now she had this big screen over her and I was wanting her to drink.  I figured out very quickly that the barium mixture was too thick for her sippy cup so we tried switching to a straw.  But by this time she was very upset and wanted nothing to do with it.  I tried unsuccessfully several more times before the radiologist admitted it wasn't going to work and the only other alternative was to put a tube up her nose down to her stomach and inject the barium that way.  

I have watched my daughter go through many things in her almost 30 months of life.  I have seen her with IV's, wires, and an NG tube in her nose when she was one day old just so she would eat.  I have held her through numerous blood draws so they can check her thyroid.  I have held her through shots.  I have held her still through many chest x-rays.  I have held her down for three catheters.  I have held her through unsuccessful attempts at inserting an IV.  I have always tried to be strong for those things.  She's little and doesn't understand anything other than it hurts or it's uncomfortable so I try not to make her more upset by being upset myself.  But there are times when as a parent, your heart hurts more than you can imagine to watch your child go through something and getting upset is just inevitable.  

I watched them put the tube into her nose, as she screamed and cried and because of the screen over her and the already three people involved in the process beside me, I couldn't really hold her this time.  All I could do was stand close and tell her that mommy was there right next to her.  They had to insert three very, very large vials of barium into the tube all while turning her in various ways so the radiologist could see what was going on.  And I have to credit them, they were great with her.  They were as quick as possible and it wasn't their fault it had to be done this way.  But I started losing it.  I longed and longed for months to hear Tera say mama and now that she can, I can't describe the pain I feel when she's crying it and I can't do anything to make her feel better.  So there's my little girl, strapped in, her arms secured next to her head, three adults maneuvering her, and she's crying over and over, "mama, dada, mama, dada".  I cried.  I told myself over and over as it was happening that I had to be strong for her, that I could cry later, but it wasn't working.  Hell, I'm crying as I write this just thinking about it.  When it was over, I picked her up as quick as I could and she calmed down. 

Where I'm going with all of this is the time right after we left the room.  My sweet girl that had just been traumatized, waved to the technicians and the radiologist.  We got out to the waiting area, and Tera waved to my mother-in-law who fortunately had come with us.  We got her out to the lobby so she could have some food finally and she was being her silly self again and waving to anybody who walked by.  

Many people, adults and children, would hate doctors after having been to as many as she has.  I can't even begin to guess how many times she's been seen by a doctor since she was born.  I've had people ask if she gets upset when we go into doctor offices and I tell them she's never been fazed.  She just walks in and acts like it's the first time and that nothing bad has ever happened to her in one.  So I think resilience is the word I'm looking for because I can't describe how else she could have experienced and gone through so much, and still act like none of it has happened.  It hasn't made her an irritable kid, or a cranky kid, or an angry kid, or even a scared kid.  She's the bravest person I know; way more than me I can promise you that.  Because I do remember all those things and it does upset me when we walk into offices where I know something painful or uncomfortable will happen to her.  I've never read about resilience being a by-product of DS, but I'm pretty sure many other parents in our situation would agree that it is.  Once again she has proven to be my little hero.  

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