Searching for Understanding

I stepped into the shower in the hospital bathroom and washed the day off of me. I had a rare moment alone where it seemed unlikely anyone would barge in unless it was an emergency. The bathroom sported a swinging door, but Chris figured out a way to keep it shut during showers early on.

I can’t remember exactly what point this was in Lucy’s stay in Dallas. But it wasn’t anywhere close to the beginning or end. I let the feelings of frustration and fear overwhelm me and I cried. Tears rained down my face with the water from the shower. I refused to be angry. In fact, I apologized profusely to God for all of the terrible, blasphemous things I had shout-whispered at him in the bathroom in the PICU at Dell. I truly meant my apology, but part of me was also afraid that Lucy had grown worse because God was punishing me.

I prayed. I begged. I begged for Lucy to get better. I begged for her to be stable without transplant. I begged for her to get a transplant if she needed one. I begged for strength to bear whatever I was going to have to bear. And I begged God for forgiveness. The one thing I wanted was for her to have a chance at life and for our family to have what it took to get her there. That’s what I had prayed for everyday in the chapel there. And that’s what I begged for in that shower. I literally got down on my knees in that shower with the water pouring over me and cried and prayed and begged.

I’m not sure how long it took, but eventually it seemed that a miracle happened. A doctor came to us some days later and told us exactly the opposite of what we had heard from the other doctors. She didn’t think Lucy’s vtach had the potential to be dangerous. She thought it seemed normal. She didn’t even think it needed to be treated medically.

By this point, Chris and I were so shell-shocked, we were afraid to believe it. We barely let ourselves be happy about it. We were too accustomed to stunning reversals at this point.

We were allowed to take her home a few days later. And she died almost exactly two months later.

It might have been the vtach. Her heart might have just worsened too quickly for us to catch it. There’s no way to know.

I don’t understand why my prayer was answered in this way. She died three days after my birthday and I remember I used my birthday wish to wish she would get well. I figured I might as well take a shot. And that weekend I just started hoping she would get a new heart on Status 2, even though that is rare. I was ready to trade in our problems for a set of new ones. I just wanted so much for her to feel better.

 All I can come up with is that those two months of normalcy were the answer to my prayer. Maybe Lucy’s early death was inevitable and God gave us those two months as a parting gift. One of my prayers had also been for our family to have a chance to be together in our home for awhile before transplant temporarily uprooted our lives. We were so worried she would never leave the hospital or she would be listed too high up to go back to Austin. We didn’t know if we would ever be together in our home again. But we got that chance. She did not live and die in the hospital. And now we just have to find a way to live with the “what-ifs”.

Tonight I thought about how much lazier I was about my eating when I was pregnant with her. I didn’t try nearly as hard to be healthy as I did with Max. It probably had nothing to do with her heart condition, but I feel so guilty. Chris and Max were sitting on the couch playing games on his IPhone and I was lying down behind them. All of a sudden, I could just picture Lucy in the room with us. It was as if she had lived and been healthy. She was toddling and crawling. Getting into things and smiling mischievously at us when we told her to stop. Laughing. Behaving like any 16-month-old. It was so clear. I have never been able to picture her healthy so clearly. It was one of the most beautiful things I’ve ever seen. I wish so much it was real.

4 Comments

  1. Debi Shaw said,

    June 27, 2013 at 9:53 pm

    I see that God answered another prayer for you, Sara.. He is giving you the strength to bear what you have gone through.. He has provided a glimpse of heaven on earth seeing Lucy alive in your heart and soul doing all the adorable things you will never forget.. That seems like the legacy that she will leave you, Chris and Max.. The ability to remember her 5, 10, 20 years from now…. But finally being able to smile again.. I hope this makes a little sense.. Prayers for you…

  2. Ruthie said,

    June 28, 2013 at 3:18 am

    You write so beautifully, so lovingly. Thank you for sharing this, and allowing us to read your thoughts. I have never met any of you, but I find myself thinking of you every day. I like the thought that God gave you all time together at home. I like that he gave you a vision of a healthy Lucy. I still can’t comprehend the loss you’ve experienced, and I hold my two a little tighter now because of it. X

  3. Jerry said,

    June 28, 2013 at 4:54 am

    Keep writing sis. When we came for the funeral one night laurie chase you and i was kind of sleeping. Yall were talking and all of a sudden i hear u say fuck i cant believe my daughter died. Ive rarely ever heard u cuss. I will never forget those words or that nite. Sara im so proud of u and how ur dealing with Lucy being gone. What a strong woman u are

  4. kittymomma said,

    July 1, 2013 at 7:23 pm

    Thank you to all of you. 🙂


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