While parents would all prefer their children outlive them, we know that’s not always the case. And even more so with our extraordinary children that have a shorter life expectancy. May this post be irrelevant for many of you, and provide some level comfort for those needing it. If nothing else, it’s been therapeutic for me.
While I didn’t raise her, I had the privilege of being raised alongside an extraordinary sister who passed away last night. Christine had been in a wheelchair from the moment she could sit up, and finished her long, patient journey last night in a body that she could barely control, couldn’t speak or communicate (other than laughing, crying & various facial expressions), and had to wholly rely on others for all her needs and comfort.
Christine was extraordinary, and I think that puts my mom & dad (and parents like mine) who care for these children on a similar plane. I watched my mom patiently feed, bathe, change, clothe and pretty much everything else for Christine her entire life. She enlisted our help as the siblings got older, which at the time I’m ashamed to admit felt like a pretty big sacrifice to my teenage self. But it was so little that we did, in comparison to what parents do for their children. But I recognize now that even that brief respite we could provide as siblings was no small deal to my parents and their marriage. I am grateful for the increased empathy and compassion being able to help in her care has given me, and the constant reminder of what’s truly important as I think about the meaning of her life. I never imagined having an extraordinary child myself, but know I benefited from the greatest training a parent could ask for in being raised with Christine.
Christine loved simple things, and we all knew how to make her smile. She enjoyed walks “around the 9” which was the pattern we’d push her in her wheelchair around the neighborhood. We’d sometimes try to incorporate wheels of our own, in skateboards, roller skates (yes, I’m that old), rollerblades, bikes, and razor scooters. Or we’d bring a ball to toss around with each other as we walked around Christine. She enjoyed the movement, fresh air and the activity of those around her.
She also had a love for commotion, so whenever someone got hurt, or a loud noise went off, she was the first to laugh, which could turn an otherwise sad or tense moment on it’s head. One of my favorite memories is of my dad slapping the dinner table and she would bust out in giggles. He kept doing it, and each time she thought it was as hilarious as the last. On other occasions, he would smack the table in anger or frustration, but she’d still laugh all the same. Once again, turning a tense moment into smiles and giggles for our family.
Christine also loved musicals. We grew up with musicals constantly running on the VCR, DVD player, and eventually on Netflix. They ran so constantly that my siblings and I could challenge anyone to any song from any Disney movie from the 80s & 90s. And there are a few of her favorites that I’m confident we could quote the entire movie. She loved some movies so much, that she would burst out of her chair with excitement, so my mom would have to “retire” those movies for a while and only bring them back out on special occasions. In addition to musicals, she loved wholesome TV shows that were maybe a bit overly dramatic at times – Mr Rogers Neighborhood, Little House on the Prairie, and others. She also was kind enough to tolerate shows we liked, and she was our excuse to watch way too much tv growing up. Thank you Christine, for our extensive knowledge of television pop culture!
Christine was also our secret litmus test. Whether we intended as much, or it just happened that way, I’m not really sure. But because of her differences, we saw people react in many different ways to her, and it was an easy way for us to sort the “wheat from the chaff” when folks met her. I’m sure that sounds judgemental, and it is. But it did go both ways, as people noticed how we acted around Christine as well. And in my case, my wife Sarah says seeing me with Christine finally sold her on us together. Again, thank you Christine!
And in many ways, my parents have (somewhat tongue-in-cheek, but not really) told us that Christine was their easiest child. She never talked back, never disobeyed, never came home late, or did anything wrong. She is their only perfect child, incapable of doing anything wrong. As innocent as a little child, she endured 44 years on this earth as our human angel.
While emotions are still very raw and mixed right now, I’m grateful for my faith in God and His plan, to know that her spirit lives on, and that she was welcomed into heavenly arms last night and is happy and free. I believe I will see her again, and that she’ll be resurrected into a body more perfect than I can imagine. I long to speak with her, to hear her voice and sense of humor, and I’m sure she’s got a slew of things to give us a hard time about that she can’t wait to tell us all.
Until we meet again, I love you Christine & please keep an eye on John from upstairs.