I’m re-publishing this. I published it on October 4, 2012 but due to website hosting problems it was deleted. I was really upset thinking it was lost forever, but my wonderful tech-savvy husband “found” it again.
I’ve contemplated writing out the details of Amelia’s time spent at home with us for a while now. It’s probably the most personal, sacred part of our story, but I don’t want to forget. We’re given sacred, spiritual experiences here on earth for a reason, and though I don’t know why, this one needs to be shared.
After the nurses left our hospital room, we scarfed down lunch and Tyler packed up our things while I held Amelia in my arms. I felt bad not helping him clean up our room, but he insisted that I continue to hold her. With her tiny hand wrapped around my finger, I felt at peace.
Two hospital volunteers came to escort us to the parking lot, one with a cart for our things and one with a wheelchair. Just as I did with Jack, I asked if I could walk instead of ride, but they declined stating it was hospital policy that I had to be pushed in a wheelchair to the door. And so I awkwardly sat, cradling my baby and holding her tight. I was nervous; the nurses had seen Amelia and knew of her condition, but the volunteers escorting us had no idea. I kept adjusting her hat, pulling it over her head, and shielded her face with the blanket a little. She was beautiful and I wasn’t ashamed, it just wasn’t the time for curiosity. Did they understand I held an angel in my arms, one that all-too-soon would return to her Heavenly Father and Mother?
We made it down the elevator and through the lobby, where I waited with Amelia in my arms for Tyler to pull the car around. It was warm that day, probably in the mid-90s. The sun was shockingly bright compared to our window-less hospital room. As the volunteer wheeled me up to the car, three older women walking by peered over my shoulder to get a glimpse of a newborn baby. It felt wonderful for about three seconds as they commented on how tiny and precious she was, but surely they noticed she looked different, right? She was perfect to me and I hated to cover her so, but would a stranger peering into our life really understand her physical differences?
As Tyler packed our bag into the trunk, I was overwhelmed at the stark difference between our quiet hospital room and the loud world outside. As the volunteers offered their awkward congratulations and left (could they feel the thick tension in the air?), I slipped into the back seat and shut the door, anxious to be away from the world again. I tried buckling her into her (borrowed) carseat, but her head needed more support than it gave and her tiny limbs seemed squished and uncomfortable. I soon gave up.
I held her in my arms the entire drive home, and hoped we wouldn’t get pulled over by a cop for having our baby out of her carseat. Forgive me for being blunt, but what difference did it make? She was going to heaven soon anyway, and if that happened in the car I wanted her to be in my arms. As we pulled safely into our garage, I was suddenly nervous. Could I handle bringing her over the threshold, into our home?
As Tyler brought in our things, I cradled her in my arms on the couch. Jack was curious as to what we had brought him, and peeked under her blanket. We unwrapped her and she proceeded to be poked in the nose, hands, and feet by her older brother. He soon became bored and continued on, playing with his new yellow construction tractor from Grammy and Grandpa Dale. Even through the loud engine noises, beeps, and general ruckus Jack created, Amelia slept tranquilly. She didn’t seem bothered or even affected by noises like she was in the hospital, and with her senses failing both Tyler and I knew her time with us was short.
My dear friend Liz stopped by shortly thereafter with dinner for our family (one of many meals delivered that week…thank you all!). What a bonding moment between friends that was, for her to see our sweet baby girl. I will never forget the tears in her eyes, and the love abounding in that room at that moment.
My dear mom was able to hold her during dinner, and Tyler’s parents were able to hold her after that. It’s interesting, the feelings you go through and the change of heart a girl like Amelia can bring. When we first found out her diagnosis, I insisted that we be the only ones to see and hold her. If I was going to have my baby here on earth for just a few minutes or hours or days, I wanted her to be in my arms the entire time. Forgive me, Amelia, for I was scared of your imperfections and sharing them with others. I didn’t want anyone but Tyler and I to see her, even for her baby blessing. But once she was in my arms, my feelings drastically changed. There’s something incredibly sacred about holding an infant connected with our Heavenly Father. The veil between heaven and earth dissolved as I felt her tiny, beating heart inside her chest. The phrase, “heaven on earth” became crystal clear to me. How could I deny others the opportunity to feel of the spirit she brought?
After dinner, I was exhausted. My breasts were full, leaky and sore, and I hadn’t gotten more than fifteen minutes of rest at a time since Saturday night. Amelia wasn’t doing too well; her breathing was shallow and irregular and her color wasn’t rosy and warm like it previously had been.
I made a poor decision to take just one Benadryl pill so I could doze for a few hours before the long night ahead of us. (I should add that Benadryl is supposed to dry up your milk, but it should never be used in combination with lack of sleep, hence my self-inflicted dilemma.) Within fifteen minutes I started seeing dark spots and my vision blurred. My life blurred. I was living in a vignette, an alternate reality that confused me. I couldn’t even function for myself, let alone as a parent to my own baby. As I sat on the couch with Amelia in my arms, I got close to dropping her several times. Thankfully I got up and tried to snap out of it, knowing the situation couldn’t end well if it continued like that. I gave her to Tyler to hold in our bed, and he proceeded to doze off so soundly without Benadryl I was also fearful.
I cried. I didn’t know what to do, and began sobbing from exhaustion and confusion. She was having difficulty breathing and didn’t have much time left. Though I didn’t want her to die alone I didn’t see another option, for my mortal body couldn’t fight off the sleepiness that encompassed me. In my heart I pleaded to my Heavenly Father for an answer to come to me, to find a solution – any solution – so she didn’t have to die alone.
My parents were staying with us, taking care of Jack for the week. I don’t recall how the solution presented itself, but though it was nearly midnight, my selfless father agreed to hold her in his arms in our bedroom while Tyler and I slept for a few hours. I don’t know how I agreed to that, but the strength must have come from above. I remember my heart aching for her warm body to be next to mine, just as it had been the two nights prior. I made him promise to wake us up if the situation became worse.
My dad said within seconds, Tyler and I were both passed out on our bed, succumbing to the sleep our bodies so desperately needed. As he held her, her breathing became more irregular, and she started to have short seizures more often. It wasn’t easy for me to watch, so I can only imagine the difficulty he had as her grandfather, holding her alone in our dark bedroom.
Around 2 o’clock in the morning I suddenly woke up, feeling slightly more well-rested and coherent than I had previously. I thanked my dad and let him go to sleep in their room across the hall, letting Tyler continue to doze on and off next to me while I cradled Amelia’s frail body. Her once pink and healthy face had become flushed and ashen, and I somehow knew it wouldn’t be long before her spirit left me. I sat there, leaning against our headboard, saddened but overjoyed at the same time. She had been with me for nine months and had become a part of me. We grew emotionally, physically and spiritually together. She and I were best friends and I didn’t want to let her go. But how fair would it be if she stayed on earth when the most glorious parts of heaven awaited her?
Anencephalic babies don’t cry; instead, they squeak. When I hear squeaking baby toys I am reminded of her. But even though because of her condition she wasn’t supposed to feel (or cry), Amelia cried in those last moments of her life. She cried out, and there was nothing, absolutely nothing I could do as her mother to help and comfort her. I felt so helpless and alone. I felt weak and useless. I was angry. When my sweet Amelia cried out in pain, I grieved and physically ached in ways I hope it never will again.
I wept for a long time. A mixed array of pain, anger, joy, and love streamed down my face, soaking my shirt. It all had happened so fast and I wasn’t ready for her life to be over. Her physical condition continued to deteriorate and my heart ached more and more for that which I was about to lose. Was I ready to let her go? She was a part of our family and a part of my life I wasn’t ready to give up on. I wanted to fight for her. But I wasn’t given the choice, and to be honest I didn’t want her spirit trapped in her body any longer anyway.
As Tyler and I sat across from one another with our hands clasped next to hers, her last breath dissolved and her beautiful spirit left this earth. It was early Thursday morning, around 3:45. We shed tears of joy and sorrow. “For it must needs be, that there is an opposition in all things.” (2 Nephi 2:11). Without sorrow and pain, our testimonies of the eternal plan of our Heavenly Father would never be strengthened.
And so I’m grateful. Even knowing how heart-wrenching this has been, given the chance I’d do it all over again.