This week we buried my husband’s nineteen-year-old youngest sister. Her death was a surprise and a great loss to all of us. This week’s post is guest written by my husband, Brad, sharing the story of his sister’s life. When I heard his quaking voice read this last Saturday, during her memorial, I was very touched – and I hope I will never complain again.
This is perspective.
My sister, Victoria, was the youngest of four children born to Sue and Richard Conte. Today we lay her to rest at the age of 19, after a heart-attack claimed her life a week ago. I’d like to share a window into her life and some of the lessons I’ve learned from it.
We tend take our body’s abilities for granted. Most of us can do whatever we want whenever we want with few limitations. It’s not until we break a bone or perhaps sprain a joint that we’re reminded how much our bodies do for us and how much of both our mundane and special activities rely on being able to use our body to our will.
But Victoria lived a life that was very shaped by limitations. She never had the physical gifts that most of us enjoy. Her first three months as a baby were very standard, but at that young age of just three months she started to experience seizures. The seizures were frequent and sporadic. Some days she had a couple, some days she had a couple hundred. Some of them were minor and only involved a roll of her eyes, others convulsed her entire body. The day the seizures began, her life changed.
Her physical and mental abilities developed very little after the seizures started, leaving her effectively frozen as a 3-month old in many areas of life. She never developed fine motor control, so she always made large sweeping movements with her arms to hit the buttons on her electronic light-up toys. She never developed speech or the ability to walk. She never even developed the ability to chew or swallow her own food, and so she got her nutrients via a feeding tube connected straight to her stomach.
Many of her obvious physical difficulties, like those, fell under the diagnoses of severe cerebral palsy. Another of her diagnoses was cortical blindness, meaning that while her eyes had vision her brain didn’t process all the information from the eyes, leaving her effectively blind in some ways.
The seizures never stopped, nor came under control. She saw many doctors and specialists. My mom met with everyone who was someone. But while some medications offered a little help regulating the seizures, they couldn’t be stopped. At one point she even had an experimental device implanted near her heart to try and neutralize seizures when they happened, but it was ineffective and eventually removed.
Her immune system was weak as well, and her health was always in a fragile balance. A simple cold had a good chance of developing into pneumonia. She was very susceptible to environmental allergies and spent most of her time later in life in rooms with constant air filtration. She had a large host of prescription medications that provided bodily regulation that she didn’t naturally have. She always had nurses who would come in and care for her to allow my mom to tend to other aspects of life.
Caring for Victoria was a full-time job and the whole family contributed. My mom by far did the vast majority of the work, but even we kids had some minor responsibilities. My dad did a lot of babysitting to give my mom some breaks, both psychologically and physically. We kids helped dress her when she was young. We would help her with her standing exercises: She had standing apparatus that provided balance so that she could stand on her own legs for about a half hour per day. One of us was often tasked with putting her onto it and keeping an eye on her until it was time to take her back off.
Protecting her immune system was everyone’s responsibility. We constantly washed our hands on entering the house and avoided sick friends so as to not bring home anything that could spread to Victoria. Each of our friends was, at some point, told that we’d have to cancel a get-together because someone in their family was sick, even if it was just a cold. To most people a common cold wasn’t a big deal, but while a cold was an inconvenience for us it was life-threatening for her.
But the relationships weren’t one-sided. She might have been able to recognize us, and she could convey excitement. She was visibly happy to receive new toys on a birthday or at Christmas, and sometimes she lit up when one of us walked into the room. When she was little enough to do so, she enjoyed rolling off of her changing table and being caught in our arms. In all, she was very sweet.
We loved our sister. We kids would make “welcome home” cards to greet her from her many trips to the hospital. We routinely changed batteries in her toys. We picked up her stuffed animals when she knocked them down and put them back on her chair. We would try to comfort her during seizures. When the kids would give gifts, like on Christmas or Mother’s Day, one of us, usually one of her sisters, Gracie or Hope, would see to it that there was one from Victoria.
Her most common toys were simple ones that lit up and made sound when a button was pressed. I once used my LEGO robotics kit to rig something together that would light up and play music when she hit a large button.
One of her pastimes was watching animated TV shows. Her favorite one was definitely Veggie Tales. Something about the animation style just clicked with her and it could sometimes keep her attention for hours. For those who’ve seen the show, Bob, Larry, and Junior had a big presence in her life.
It was very challenging to see my sister endure these things, and I can only imagine it was more so for my mom. So much pain, so much frustration, so much difficulty.
But God is faithful, so we knew God had not forgotten her. We knew He had a plan for her. Watching her life was like watching a butterfly’s cocoon: It isn’t the final result. It isn’t the finished product. God had not neglected her, but was building something with her.
While her life may have been characterized by difficulty, very notably her life was also not characterized by complaining. She experienced a lot of discomfort, frustration, and pain, but she expressed very little of it. In fact, I found the times that she did express it discomforting. On the rare occasion she would express pain, I shuddered inside thinking that if she hadn’t complained about all she normally went through, what was she going through then?
Just earlier this week I had a cold and I lost my voice for a couple days. I complained. It was hard to since I had no voice, but I still found a way to. I wish I hadn’t.
I wish I was as patient as she was. I know that I complain far more than she did.
And I will be honest: I have asked myself an ageless question countless times, “Why her?” Or rather, “Why not me?” Why did she have hard time moving her limbs while I was able to play with a LEGO robotics kit? What did I do to deserve that?
The answer, of course, is nothing. I don’t understand God’s sovereignty, and neither is He under any obligation to explain it to me.
But I have learned how much I have to be grateful for. How much God has blessed me. And how many things are so easily taken for granted.
God showed Himself to Victoria and the rest of us through our mom. To care for Victoria’s needs, my mom laid down her life and devoted it to her daughter. She put tremendous effort into learning Victoria’s specific needs and ensuring they were met. She learned more about medicine than I think she would have ever anticipated she would need to. She met with many doctors and specialists to examine and learn Victoria’s condition. She worked tirelessly without complaining for Victoria’s benefit.
She trained the nurses who came into the home to help with the work. To give a glimpse into the complexity of Victoria’s situation, nurses would typically need a couple months of weekly training before they could be left with Victoria unsupervised for a few hours. Few nurses were ever comfortable taking a multi-day shift, meaning that my mom’s travel was usually restricted to where ever she could go and return to within 8 hours. To spend a day or two out of the home was a treat that she rarely enjoyed.
I cannot over-emphasise how much effort and love my mother devoted to Victoria. And I find it mind-blowing that God’s love is greater than that.
The night of Victoria’s passing, the last thing my mom said to her was this prayer:
May the Lord bless you and keep you and may the Lord make His face shine upon you. May the Lord lift up His countenance upon you and give you peace. (Numbers 6:24-26)
And the Lord has given her peace.
Today we remember Victoria as a sister and daughter. It’s a hard time, and we don’t know why God took her so young, but we learned from her and God used her in many people’s lives. And in our sadness, we have reassurance in this: God made her special and He loves her very much.