Friday, January 28, 2011

Eye contact

Eye contact is something that is cultural, and in the South people generally look at strangers in the eye, smile, and say "hi" or nod. Simply acknowledging their existence. I grew up in NY, and don't remember doing that. If it was someone you knew, of course you said hi and smiled. But strangers? No way!

I suppose I've become a "Southerner" now, as I've come to accept and practice this cultural norm, and on the rare occasion that some one does not reciprocate, it makes me think "wow, they're rude!" or "what's wrong with them?!?"

I felt this way the first time we stayed at the Ronald Mcdonald house when Jordan was going to have his MRI and appointment with Infectious Disease/Immunology. When we got there, I figured we'd all be in the "same boat" so to speak: we were all there because our child was sick. We had an unspoken bond even before we met. The staff at the RMH are great, smiled a lot and were very friendly. Some of the people in the house were friendly, but I just didn't understand why people wouldn't look at me in the hallway when we passed. We had our day at UNC, and fortunately we were able to leave with good news!

We went back to the RMH on Wednesday in preparation for another early AM with his Infectious Disease doctor as well as a consult with a peds surgeon in regards to an inguinal hernia. Again, staff and volunteers were all smiles, very kind, etc. But the residents seemed to just pass by me, without looking up, with a few exceptions. I simply did not understand it!

We went to our appointments yesterday morning. Peds surgeon decided it would be best to wait for an official diagnosis before they did surgery, as they wouldn't want to make things worse for him, or if his condition required surgery, then perhaps they could combine the two. Then we were off to ID dr. Labs came back showing all the tests except for two were completely normal. The two levels that were off were not off "enough" for the doctor to even be concerned about. He did want to xray his sinuses to see if there was a sinus infection, and sure enough, there was! He's hopeful that this is what has been causing his fevers and that treatment for 6 weeks with an antibiotic will be what he needs. But he said as far as his other problems, they were not tied to a weakened immune system or anything else, so we'd have to go see a GI doctor for his chronic diarrhea.

I walked out defeated. I tried to hold back my tears of frustration, after all I was out in public. Plus I still had to drive back to the RMH and check out. On the way home, I would let myself cry, but until then, I just needed to suck it up.

I got to the RMH and went back to my room, looked at the clock and it was 1:30. I still hadn't eaten anything but a poptart at 7AM. I'm sure JoJo was hungry too, so I figured we'd go ahead and eat at the house first. I went to lay my laptop bag on the bed, and then the flood gates opened. I fell to the ground sobbing uncontrollably. It was not a diagnosis I had gotten, it was the fact that there was NO diagnosis, no broader explanation to why my baby has all of these issues. I began to wonder if I was just crazy, maybe there isn't anything wrong with him at all. Then I wept more at the totally helpless I felt.

Then all the sudden my tears stopped and I got mad. Mad that God created Jordan this way and was not letting us do anything about it. (I'm just being honest here, I'm sorry if I offend anyone). I got really angry that he would let this crap go on for so long without a reason. So many doctors, and the only thing I have to show for it is MORE medicine and referrals for MORE doctors. How much longer can I do this? The constant doctors visits, the agony of not knowing, etc. It is so incredibly draining both physically and emotionally. And then I started crying yet again because I was thinking about myself instead of my little JoJo.

After I finally had calmed myself down & stopped crying, I went and washed my face. It was well after 2, so I thought maybe getting something to eat would help me calm down. As we made our way from our room to the kitchen, I finally understood why I hadn't gotten eye contact. I kept my head down, stared at the floor. I didn't want to see a smiling face or to even say hi to someone else because I knew that if I did, I would probably fall apart again & start sobbing uncontrollably. And I hadn't even had a clear diagnosis. How much worse do these parents feel that already have a diagnosis?

I just want answers, and I do not understand why we don't have them. I don't get why God has us going down this path. I have to hold on to the idea that something good would come of all of this, but right now, it sucks.Even writing this, I'm wiping away the tears. It hurts beyond words. I want to be able to stop looking at the ground and be able to smile and nod at people without falling to pieces and sobbing.


mommynts said...

I'm trying my best to hold back the tears reading this. I know that God will work you guys through this, and all will work out for Good!
We are continually praying for JoJo and for your family.

Casey said...

Know you're never crying alone...

And I have to say that it might be WORSE not knowing than knowing. At least the people who have received a devastating diagnosis know what they're up against. They have a plan of action. They aren't twisting in the wind.

Your ground has been ripped out from under you. Baby J is sick and no one can tell you why. He isn't sick "enough" so they turf you to another specialty. And you start the process over, hopes high that "THIS GUY" can help.

Chris, you're so strong, you have a great family and amazing kids. You have been pressed, but not crushed. Persecuted, not abandoned. Struck down, but not destroyed. You are blessed beyond the curse for His Promise will endure. Hang in there!

Chrisitna Hill said...

Hun, I am crying just reading and sympathizing with you. I love you so much and your family, and I too am angry with the Father and wondering why. You are not crazy and I believe the Father is big enough to handle your feelings. He knows anyway and I think that He not only understands where you are but is pleased that you are honest with Him. Don't let anyone criticise you for how you feel. It's only when we are honest that the Father can help us work through them anyway. He loves you and your baby, He will provide answers, He will work all things together for good, but right now you are hurting and your baby is hurting and your family is hurting and you are allowed to. We are praying for you, for answers, peace, healing, strength, support, clarity, and unity. We love you all, you are wonderful people and have been diligent through all of this, that will be rewarded. We are here for you, what ever we can do.

Aprille said...

love you.

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