Monday, March 21, 2016

To Austin: I'm Sorry


Well Austin, I had know idea that was going to happen. You were lying on the floor, and I went over and wrapped my arms under and around you and snuggled my face into to your neck...and burst into tears.

You see, you had been making fussy noises which is actually your version of crying, and I had been in the middle of something that I had decided was more important. So I let you cry for a while until it started bothering me enough to quit my project to see what you needed. 

I put my wants before your needs. Or maybe it was just your wants. But how would I know the difference since your only means of communication when I'm not right next to you is to call out with happy or sad sounds? I have to always assume you actually need something. 

And for that matter, I already knew what you needed. For the past few days you have officially been going through a phase. I'd forgotten about phases that typical kids go through because you have been so atypical. There were no terrible twos or trying threes. There were no defiant stages or tantrums. You have mostly gone with the flow unless you were sick or needed a diaper change.

But the last few days, you have cried over what can only be described as boredom, loneliness, and/or frustration. You can't move yourself, you can't play with a toy to amuse yourself, and you don't want to be alone anymore. You have actually become clingy! 

Which is great! And not great. I love that you want to hang out with me. I love that you can communicate that to me. I love that you need me.

But I don't love that you can't just walk over and play near me when you want to. I don't love that you are tethered to a feeding pump which you can tangle up in if you roll around to much unattended. I don't love that you can't just sit in my lap comfortably before you start choking and need suctioning, and that it takes all my attention and energy to hold you in place.

So when I finally got up to see about your needs and wrapped my arms around you and snuggled you, and you went straight from fussing to giggling and laughing, I couldn't help but cry...out of guilt, out of joy, out of sadness.


Yet there grief was, attacking me from behind when I least expected it bringing with it all of my "I just wish that...", "It's not fair...", "How am I going to...", and "Why did this happen to me..." thoughts.

Oh how I grieve that you are trapped in that non-compliant body. I grieve your dependence on me for your every desire, dependent on my whims and time schedule. How I wish this hadn't happened to you down to the core of my being.

And I'm so sorry...sorry I delay responding to you out of laziness or putting my wants and desires first. But I also want you to know I do love you. I do want to meet your needs. You deserve the best I can offer.

Oh Austin, how am I going to do this?!

2 comments:

  1. Rachel, thank you so much for being honest and transparent and real, for sharing from the depths of your heart. I cried as I read this today, but that's ok...I want to understand your struggle and never forget your family's daily journey. I wish I lived closer to you; I would welcome your mascara stains on my shoulder. I prayed for you and Austin this morning. Hugs to you, Rachel. Kathleen A

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  2. Kathleen, thank you for coming alongside me! I appreciate your kind words and covet your prayers.

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