There are moments in life when you reach your limit and feel as though you've had the wind completely knocked out you. There are moments in life where you wish the world would stop, just for a moment, so you can close your eyes, catch your breathe, and continue on.
That day was Thursday.
Our morning began with a very sick little boy rotating between vomiting and sleeping on the living room floor. He never made it past that 1 hour post-vomit rule for giving a child liquids. After having several phone conversations with AJ's pediatrician and ENT/ CI surgeon's office, I drove him to Children's emergency room. At the very least he was severly dehydrated and we also wanted to check for meningitis (risk with CI surgery).
Symptoms of meningitis include sensitivity to light, sensitivity to loud noises, and a stiff neck. With AJ having cerebral palsy, it was extremely hard for me to tell if his tone was kicking in, or if he really had a stiff neck.
I arrived at the ER to hear the sound of the Flight for Life helicopter on the roof of the building. As I was walking up to the door the rotor blades of the helicopter became a blur as it departed from the rooftop. While looking up I realized that the Day Surgery room we had been in just a week ago was directly above us. Sometimes I wish I didn't have the memory of an elephant.
We were checked in and triaged quickly. They put AJ on the list as the next child for a room. We were lucky enough to occupy a little cubby that looked like it was for bicycle injuries or overflow. Nevertheless, they pulled the curtain and we had our own little area. Thank God. I was not thrilled with the idea of my child vomiting in front of other children in the waiting room. They also put us in there because AJ had an "open" incision from his CI surgery.
Yesterday, his incision was a perk.
THREE HOURS LATER we were taken back to the ER. No, we were not pleased. Yes we did speak up, multiple times. One of the nurses was constantly running in and out of the ER checking to see if they were ready for us. Three ambulances came in while we were waiting, taking first priority. AJ passed out on my shoulder. I was thankful he did so. If he hadn't, I think I may have lost it there in our little cubby.
It is amazing where you mind wanders too when you are waiting for...anything. I thought about everything from the blue fabric covering the window, to we really should get boxes for packing, to oh my God this is just like the plane ride home from Houston.
We spent five hours in an actual room. The ER at Children's is like a little city. They were very well organized (which you know this Mom loves). We had an awesome Resident, Attending, and Nurses. AJ received fluids and towards the end of our stay downed two cups of apple juice. He was also given an anti-nausea med. Which, with our experience last week, we quickly asked which medicine it was and quickly asked for the correct anti-nausea med. He was moving his head all around, so neck stiffness was ruled out, as was meningitis. Since he had an IV in his left hand just last week, the nurses put his IV in his right hand. Joy. Somehow he managed around the soft splint contraption they used and was able to suck on his right thumb and fell asleep.
We left at 10pm. I drove to the pharmacy to fill the script for the anti-nausea medicine we requested and pick-up dinner. It wasn't until we left that my hunger headache came on and I realized I had only eaten the peanut M&M's Jer fed to me while AJ was sleeping on me in the ER. The pharmacy technician was such a ray of sunshine (use of sarcasm here). Thankfully by the time I arrived home AJ had eaten well and was already sleeping.
No parent should know the main number of the hospital by heart. No parent should have to sit and wait for their child to be treated for any amount of time (I know, wishful thinking). No parent should have to watch their child suffer-AT ALL. I don't care if that means a boo-boo or watching them enter/exit a surgery.
We have been on the same rollercoaster ride since we brought our AJ home. It has never stopped. And yes, I am taking a moment to do a little complaining. When we were supposed to be jubliant about him being home, we were rushing him to the bathroom up the ramp knowing he was going to be sick again. We were saying "Don't touch him, he's really sick" and speeding to urgent care instead of watching him peacefully sleep in our arms while enjoying balloons and hugs with family and friends. We missed the honeymoon period during the first few months after his homecoming, knowing "something was wrong" and desperately trying to get him the help he needed.
We've spent the last year grieving, coping, strategizing, and fighting for our son and his needs. It has never stopped. The breaks here and there that Jeremy and I have taken have worked short-term, but all in all...it never stops. We have our own live version of dominoes falling one by one as we go along.
Today I sit here, the third day of working on this particular post, wishing it would all just stop.
I've found myself wondering what life would be like without therapies, doctor's appointments, and watching AJ's every move. Are these selfish statements? Perhaps. What is even harder for us as parents is watching all that AJ has gone through in his short little life. I am constantly reminded of how many scars he has on his tiny little hands from countless IV's in Guatemala. I am constantly reminded how we don't know everything about him. We were not there for the first thirteen months of his life. I wish things could stop for him. I wish he didn't have to work so damn hard at things that come so natural and easy to us.
I wish that when people ask me how he's doing I could answer "He's fine." The whole question "How are you?", is a set-up if you ask me. We all want to hear "Fine. Ok. Great! How are you?!" I never have that answer, because something is always going on. I am too truthful to lie or hold it in. Plain and simple.
As hard as it is on us, I can only imagine how much AJ must dislike all of the drama he has been through. We KNOW that everything we are doing will benefit him and dramatically improve his quality of life. We can only hope that one day he will say "Thank You" and not hate us.
He is eating and drinking well but is struggling with his balance and has stopped walking. We knew that his day of throwing-up was violent and exhausting. But it has been a year and half since my child was a blob of jello. His regressing back to that was SCARY. We called AJ's PT and discussed a plan to help him regain his strength/balance. His CP is really kicking in while he rebounds. Today he is crawling at regular pace and can stand and take two steps before falling. As he heals and feels better his balance will improve. We have to remember that his body takes longer to rebound from an illness. We were actually lucky that he was up and mobile so quickly after the CI surgery.
I don't think we've really had a moment to savor that our son has a cochlear implant. Early last week we made our decision regarding post-activation speech therapy. We will continue with our SLP at Children's Hospital. His incision is barely even noticable now.
While holding and speaking to our "niece" today, I found myself turning her on my lap, talking and beginning to sign to her while she was staring at the lights across the room. I then though, she can hear me. Duh, Heidi. I guess signing just comes natural to me now.
I suddenly realized that my son is going to hear me. Really? I'm not so convinced. That's a bigger piece than I can chew at the moment. We're supposed to be excited about his activation and then ticker counting down the days. Eh. Ok. Sure. My mind is already ahead of that day, planning for speech therapy the next day and what we can do at home (toys/activities/etc) to help AJ listen. I can't "imagine" it, because I've never experienced it. So long I've been that parent who's child can't communicate with her. Things are about to change. And I'm not so sure I'm ready or know how to handle that.
There is such a thing as too much...but tomorrow is another day. The best part about that? It's a NEW DAY.