I never thought I would be able to correctly identify the beeping of monitors and machines in a cold hospital room. After all, the first time I was ever admitted into a hospital was when I was giving birth to my little one. After just two nights inside these four walls, I could identify which monitor is loudly vying for our attention, as if to mock us with each loud beep as a reminder of what critical condition our little Grace is in. The constant whir of the many machines in this room actually calm my loud and incredibly frazzled brain for a few moments of reprieve only to be disturbed by those loud and obnoxious beeps. I thought to myself today that the beeping of an elevator will never sound insignificant to me anymore.
I feel so much compassion while in this hospital. Compassion for my little girl who is silently suffering in constant sedation from the cocktail of medicine coursing through her little body. Compassion for my husband who has always been so steady with his emotions during the 9 years we have been together. Seeing him breakdown and bow his head at the bedside of his little "Bubba" is heart wrenching but also makes me love him even more than I have ever done. Compassion for the other parents in the ward who I share the water cooler refills with, or the laundry room with. We don't speak to each other and can't offer a smile from under our masks, but our eyes meet for a few seconds while passing in the quiet hallways of this life saving place. Our eyes say all we need to say with one glance. One mother I've passed by a few times walks with her shoulders slumped and a tired walk. I can see the invisible weight of the sickness of her child weighing her ankles down as she trudged along. I overhear her saying she has been here for over a month. My mood immediately changes into hopelessness, thinking that I will be in her position in a few weeks, barring a miracle. Lastly I feel compassion for the doctors and nurses. The doctors are the bearers of both good news and bad. I can't imagine how many times they have to deliver bad news to a hopeful set of parents who are awaiting a good turn of events. The nurses... oh the nurses. They are the unsung heroes of this operation. They are in the trenches with the patients and the frantic parents, offering words of hope when all the parents see is a dark tunnel. The doctors stand on the shoulders of nurses and are able to do their job because of these wonderful earth angels.
My daughter doesn't look like herself. I know its her underneath this swollen and lifeless shell of her that I see on the outside. I try not to look at her too much because my heart aches to the point where I almost don't feel like myself. Her once plump and rosy lips are chapped, cracked and hard. Her little fingers that loved to pinch my skin and pull my hair are all laying so neatly immobile in the splint they have her arm in to keep the IV from moving around. Her legs used to be the strongest most active part of her little body are now draped over a rolled up towel to keep from being in the same position for too long. These legs that normally kick me away during diaper changes, and twirl around while I wrestle to clean her with a wipe are just still. As still as I've ever seen them in her 10 months on this earth.
Pete and I don't feel like fighting most of the day. Fighting could mean getting up to take a shower or getting something to eat. Fighting could mean forcing our minds to think positive thoughts or sing a song to our little girl. I mustered up the courage to try to sing her favorite song softly into her ear today (Levitating by Dua Lipa) and after singing the the first 5 words my voice broke and before I knew it my eyes were cloudy with uninvited tears rolling down my face. Before all this, when I sang that song to her, she would immediately stop what she was doing and clap her hands or wave her arms enthusiastically in the air. This time I got the sound of her respirator. I constantly fear that she might not remember that song when and if she wakes up, or worse, not recognize me or her dad. When we don't feel like fighting, our friends and family pick up the slack from where ever they are and fight for us from all corners of the globe. Everywhere from Singapore to Canada to Mexico to Australia. All of your messages and venmo gifts for food serve as a boost in our battery to charge up and give us the strength to get up and fight for our little one. So we thank you. Each and every one of you. Even the messages from people I don't know, I have read all of them. Thanks for reading and I look forward to getting my words down again in the near future to help cope with what we are going through.