Perception, And People in Hallways

I used to walk down the hallways of hospitals, and see mothers or fathers pushing their child in a wheelchair, and pulling an IV rack behind them. I would always smile at the child, noticing first the the many cords and tubes connecting them to the IV rack, and then their gender or hair color. As I passed by, I would feel a sadness in my heart for that child, who had obviously been dealing with whatever condition they had for their whole life.

After all, things that limiting didn't just happen anytime. They happened at birth, and were dealt with and accepted by early childhood. The parents always knew they would be the ones pulling an IV rack behind them. The child always knew he/she would be confined to a bed and connected to a machine. They always knew what lay ahead for their child. It was the norm for them. They always knew.

Oh, how could I be so wrong?

I walk down the halls of the hospital now, and wonder how long it has been since this or that person has found out something terrible about their child. I see parents standing at bedsides and wonder how soon before that moment, their world came crashing down. How much warning did they have that something was wrong? Was it enough to prepare themselves? Is it ever enough?

 I sit and think about what their future will look like. Will their child recover? Will he/she lose simple, basic, body functions, like the ability to swallow? What toll will this have on their child?

I wonder these things, because I don't know them for myself.

Mason is recovering quickly, yes...but there are still many things that can go wrong. At the moment, he is having a hard time swallowing food, and may have to have a feeding tube inserted. If his body can't regulate the extra fluid in his brain, he will have to have a permanent shunt...among other things.

Life in the hospital is hard for him. His characteristic strong will has been broken, and he has resorted to outright begging and pleading when anyone comes near with a needle, or something that looks like it may hurt. He has nightmares about being poked with a needle, or being held (stuck in bed). He's losing trust in my comforting since it is never "alright," as I say it will be.

And after all this; after all this scary pain and discomfort, there is still the Chemo and Radiation therapy to get through. And after that, there is the chance that it may return...or that it may not completely go away.

And the hardest part is that this was not expected. This was not planned for, or made known ahead of time. This has not been going on since birth. This was sudden; so sudden, that I had no idea of the enormous amount of things I should have prepared him for as I said goodbye in the surgery area; all the pain he should expect, and the changes in body regulation; that he would have to wear a diaper, even though he is a "big boy."

I am now that mother pushing my son in a wheelchair, pulling an IV rack behind as we walk down the hallway. I never knew. I have been so naive.

Thank goodness he is resilient. I hope it's enough.


  1. Pene, you are so amazing and strong, I am so proud of you for being there for your son. This can't be easy. I remember when Sheldon had an intestinal infection a couple years back and lost a bunch of weight and had some other scary things going on and there are just few things more sad than a little toddler in a hospital. So much unknown, so much you can't explain, so much fear for them. I remember smiling at the other parents thinking "we're on the same team", even though I'm sure most of those parents were dealing with much larger difficulties than I was.
    Anyway, I enjoyed this post. We're still praying for and thinking about you and Mason. Love you both!!

  2. This post broke my heart. Especially the feeling that he is losing trust in his momma's comfort. But don't worry, girl. In a world where 'comfort' is disappearing for him your constant presence and constant love is where his peace and comfort will come from. I'm sure it's a transitioning time for both of you. I pray that soon you will be able to find some sort of comfort and peace yourself too. Maybe the constant love of your father in heaven for you and for Mason.

  3. You are all in my prayers. love you so much Pen... your strength and your faith inspire me. Love you.

  4. Thank you for the beautiful post. This is one of those things you cannot know until you've been there. Stay strong.


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