The Holiday tree was decorated with ornaments and twinkling lights. Presents yet to be bought and wrapped. Most children lie await each night waiting for Santa, not Lidia…she was waiting for me.
It was three days before Christmas and the rush of the Holiday was at its peak. I was asked to see a young family of three. The patient was a 20 month old girl named Lidia. The father was 23 and worked at an electronics store. Mom was 18 and didn’t graduate High School. Lidia was born with a very rare genetic disease that caused muscle wasting. In the case of Lidia, some of her muscles would never develop.
Lidia was not able to achieve all the normal development markers. She was unable to hold her head up at three months, unable to stand and now unable to swallow. She was fed through a surgically inserted feeding tube into her stomach that was becoming problematic and backing up.
I was asked specifically to go out and assess for the violent seizures that Lidia was starting to have. I called the house at 9 am. I spoke to the father who requested I visit around 1pm. I arrived at the agreed upon time and was greeted at the front door by the father who graciously invited me in. The family was from Turkey and had great difficulty with the language. I waited for 20 minutes. We attempted conversation, drank tea and experienced long periods of silence.
There was a call from the other room and the father leaped up and followed the voice. Soon thereafter mom entered. She was a beautiful childlike young woman with big eyes and a wide smile. Her English was better than dad’s but still cryptic. She apologized for the delay. Behind mom was dad who was carrying Lidia. Lidia was the size of a one year old. She couldn’t hold her head up without assistance. Her eyelids were heavy as the muscles in her eyelids were too weak to keep them open.
Lidia was dressed in a beautiful black velvet dress with purple lace and purple sparkles. Her black hair was shiny, clean and clipped back from her face with purple clips. She had a large taffeta purple petticoat under her dress that made her dress stand out. Her little socks were purple as well and she had shiny black patent leather shoes on her feet. She looked like a sleeping doll.
The medications that we used for Lidia’s seizures made her sleepy and added to the already “rag doll” appearance. Lidia was propped up on a mountain of pillows for support. This process took almost 7 minutes to complete. Both parents were meticulous in their positioning of her head, arms and legs. Every body part was given complete attention, focus and care. I was mesmerized. When Lidia was finally situated to their liking they sat facing me and the mother began to talk.
“I am so sorry for the delay for your visit today. We have been working on getting Lidia ready ever since you called this morning.” That was five hours ago I thought! “We get way too few visitors and it is important to us that Lidia is presented well and respectful to our company.
It took me a while to shake off my surprise and consider the enormous amount of energy and time it took to have this beautiful, precious and dying girl presented to me. I started to feel guilt and shame that I didn’t think twice about what I was going to wear or prepare to see this family. It was just going to be another “routine visit.”
During my hundreds of visits as a Palliative nurse I have cared and visited people who surely didn’t spend time and concern over how they appeared to the staff that came in to care for them. But here in Lidia’s home and their culture it did matter and was a sign of great respect for people of the “Healing” profession.
I performed my assessment with utmost care to not disturb Lidia’s resting or her appearance. I reflected on how arduous and purposeful the bathing, washing of her hair and the dressing of her little weak body must have been. How proud these young parents were of their ability to present such a beautiful girl. I thought this they have control over…little else.
I marveled and acknowledged their accomplishment along with providing some suggestions and instructions for their final days with Lidia. I was cautious not to schedule daily nursing visits as I feared the prep time for this little family was too great.
Lidia died one week later after my visit. I never saw her or her little family again after that initial meeting. That was many years ago. I remember every detail of that visit as I prepare for the Holidays still. I don’t know if I ever have or ever will receive as great a gift as the one I received that day. Purple ribbons have taken on a new meaning for me. It reminds me of this little family who had nothing left to give other than the presentation of their daughter and the desire to make something out of a miserable and sad situation. Lidia all dressed up in her black velvet, purple lace and ribbon.
