For almost three weeks now, we have been posting updates on Amber’s progress to this blog. It’s been a bumpy road for Amber, but the progress has been positive. But it’s also been a bumpy road for us, her parents. Emotional highs and lows, and deep tests of our Faith. I wrote something privately a few days ago describing (in raw emotional detail) one of those low moments, and decided to share to help others understand a little bit better.
Yesterday (Thursday April 5th) was a rough day for me emotionally. I was not at the hospital when her breathing and feed tubes were extubated, and I felt guilty about that. I had slept home the night before with the rest of the family and had some appointments during the day. I know Matt was there and he was good about keeping me well updated and even sent me a picture of her sans facial tubes, which helped but wasn’t the same.
Once everything was set at home, it was time to hit the road. As I’m driving through Hartford, I can’t help but feel anxious about seeing Amber.
Walking from the parking garage, my arms are full of gifts, a bag of food, a second bag of food, a big bag of clean laundry, and my purse. As I smoosh to the back of a cramped elevator, we arrive at Level 3, Amber’s floor. After practically knocking people down trying to get out, I can’t get to our sleep room fast enough to drop off all this stuff so I can get to my girl.
As I’m walking down the hall, and just as I’m about to enter her room, a man with a white plastic helmet excuses himself as he comes out of her room. “I was just in there fitting her with this helmet and we should have one for her soon”. I politely nod and say okay. Then walk into Amber’s room.
She looks good with no tubes on her face . . . but that’s not entirely what my mind and tightness of my belly was focusing on. As I look at her, lying straight in bed, I see the left side of her head kind of awkwardly in the pillow, and the right side shaved with several lines of staples. She’s awake but with her eyes mainly to the right, bubbles pooled in her mouth, and raspy breathing. When she yawns, it’s only the right side . . . and on further inspection, I see that the left side of her face and mouth clearly has a droop. It saddens me. Because even though I “knew” it was going to be a long road, seeing her like this validates just how really long the road will be.
Not knowing if Amber can get back to what Amber was, hurts my heart so much. It is so scary and I hate that there is doubt in my heart. I’m supposed to be strong for her but I was standing there with all these thoughts and emotions coursing through me, and in my mind’s eye, I saw myself high-tailing it out of this room, out of this hospital, and out of CT. What hurt my heart the most? Is the fact that I am a coward.
Self doubt. Doubt in everything. Just feeling low..
But then, when she saw me in her view, and gave me a little right sided smile with an ever so slight dimple showing…all of those feelings that were so strong just seconds ago, fizzled out just a tiny bit. Even though I know there is a good chance Amber will never be as she once was, I’m glad that God is giving me a little bit more extra time with her today.