Part of Their World

I woke Saturday morning and, as has become my custom, I scrolled through Facebook before getting out of bed. That's when I learned that Eli, who recently turned 5 years old after having been diagnosed with anencephaly before birth, had passed away.  I knew he was sick, but still, this seemed to happen more suddenly than when Baby Vitoria, Baby Pearce, or Baby Angela passed away.  In the 7 years since Gabriel was diagnosed with anencephaly, our community has lost so many special children.  When our babies survive for years, the rest of the community tends to live vicariously through his or her parents.  At a meet n' greet held earlier in the year, parents who had lost their children years ago were able to hold Eli, and through him, hold their baby one more time.  It's hard to explain how much they mean to us - Because it's hard to even explain to most people what it is like to lose a child.  It is inexplicable, and unimaginable. 

I got up, and went about my day with a heavy heart.   

The girls had dance class.  A new girl was in their class, probably about Eden's age.  Her dad sat among the other parents, holding his two other children in his lap.  One of them was a girl, apparently about Delilah's age.  She clapped with delight and narrated the dancers' actions. She laughed at Delilah, who just sorta does her own thing for most of the class.  She moved her arms to show that she could do what the other dancers were doing.  So, I asked her father, "Why isn't she in dance?  She is probably old enough."  He answered, "Well, she's. . ." and he gestured, but I wasn't sure what he meant.  Her mother filled in the gaps, pointing at a small wheelchair.  The little girl doesn't have use of her legs.  Embarrassed and sad, I tried to keep my foot out of my mouth for the rest of class.  In my heart, I know her parents weren't offended or angry with me.  But I know they probably experienced a little sting in their hearts, mourning for the things there little girl would never get to do.  I know, because I have felt the sting in a very different set of circumstances.  

After class I took Eden for her first haircut at a little turn 'em and burn 'em SuperCuts type of salon.  Her hairdresser, Lily, graciously saved the hair she trimmed for Eden and put it in an envelope for me.  She smiled with a whimper when she saw my tears, probably thinking that I was crying because my little girls was growing up and an inch was being trimmed from her long, beautiful hair.  She couldn't have known that I was thinking about the lock of hair from Gabriel, tucked away in his memory box, cut as we prepared his body for transfer to the funeral home.  

We had a quick lunch at home, and I loaded the girls in the car for a quick trip to the park.  There were very few children on the playground, and the girls immediately rushed to the closest play structure, where another little girls was playing and being monitored by her teenage brother.  It took me a second to realize that the gray sweatpants she was wearing were no covering her legs, but two small stubs where her legs would be.  She was moving herself around using her stubs, one longer than the other, and her arms.  Still, she was able to haul herself onto the equipment and use the slides.  "She's pretty amazing, huh?" I said to her brother.  He smiled, and said thanks.  The interaction must have caused her to take notice of me, because she crawled over to my feet and smiled.  I learned that her name was also Lily.  Her brother was loving and doting, but also a teenager, and I could tell he was on some sort of conference call with a girl.  I asked if it was okay to play with her, and he said yes, so I watched her, Eden, and Delilah climb and play on the slide.  Lily asked me to catch her at the bottom of the slide, and she smiled with so much joy when I did.  She chased me, I chased her, she let me hold her to help her with one of the toys.  The park has a baby swing that has a regular swing attached, allowing mothers to face their baby and swing with them.  Lily's brother put Lily in the baby swing and swung with her for a bit, but when Delilah approached he allowed her to take his seat, and he pushed them both on the swing while he kept up his video call.  The tears welled in my eyes, watching Lily and Delilah sit face to face, swinging contentedly, and as always happens in moments like these, I could see the shadow of the 7 year old boy who should have been with us that day.  

The day was full strange coincidences.  Two Lillies.  Two little girls who couldn't walk, couldn't run with legs like most of us have.  

A birthday party was being hosted at the park that day, with a mermaid theme.  For personal reasons I have become more enamoured with the movie "The Little Mermaid" than I was even as a little girl, so my mind drifted easily to the song "Part of Your World." I wondered if either of the little girls I met that day wondered what it would be like to walk, to run like a "normal" person. I wondered if I had it in me to care for a special needs child for 5 years, like Eli's parents did.  I know that I will tell you firmly that I would take my child here with me, even with special needs, any day, but I also know that is quite easy to say when you are not living the struggle that those parents live, and your heart isn't breaking for the things your baby will never get to do.  

Recently I was asked to imagine seeing Gabriel again.  I always see him with a bandage on his open skull.  I always see him as he was here.  That's who he is, to me.  That's who I love.  But my faith teaches me that he is whole now, that Lily will be hole, that the girl in dance class will walk.  They will walk, they will run - God has made a place for them, and for us, that is beyond what we can imagine.  Despite our legs and our abilities and our good health that we enjoy here, we are not whole ourselves.  I long to be with Gabriel, with Eli, with the friends and family I've lost - A part of their world. 

Dedicated to Elijah Sly, Warrior.