Parents at a Loss
Parents grieve over the loss of a ...
David Kennison, 33, lives in Fort Myers with his wife, Luisa, 32, and son, James, 7. The Kennison’s 3-year-old daughter, Ellie, died in June 2010 of a kidney disorder.
“I remember the day Ellie was born. Luisa and I have always talked about 3 or 4 kids — having a lot of kids. And when she was born I felt so complete. You know — a boy, a girl. She was so perfect. She seemed so right. I said if we never had another child I would be OK with that because we have two perfect kids.
She developed normally for about a year — just like any other kid. Around 6 months she started to have certain signs of developmental delays. At a certain point she wasn’t rolling over when she typically should be, wasn’t getting up in a crawling stance when she should. But nothing that seemed maj or. Then, at about a year, she was missing about 75 percent of her milestones. So it alerted that she was obviously behind. We spent a good year of her life just trying to figure out what was going on. We thought it was maybe a thyroid issue. She did MRIs and blood tests, and nothing really came about.
At a point, she went to see another neurologist here locally. He still couldn’t determine what was going on. He saw her about a month later and within that month she started doing this hand grasping and she started grinding her teeth quite a bit. That’s when the doctor told Luisa he wasn’t sure but he thought she might have Rett Syndrome.
Rett Syndrome is a neurological disorder that affects primarily girls. It’s a degenerative neuro-disorder. They’ll develop normally, then they’ll start to regress. They lose a lot of their abilities. Ellie never walked or talked. Some girls do. But they would lose their speech. They would lose their ability to use their hands. They’d lose their ability to walk. They did a blood test and about a month later confirmed that she had Rett Syndrome.
It was pretty devastating. We hadn’t even gotten the chance to get over that, then about a month later there was an issue that popped up on one of her blood tests that she had gotten for her thyroid. Through a whole slew of tests we ended up going to Miami and she ended up testing for Nephrotic Syndrome, which was a kidney disorder. And that was what ultimately took her life this year.
She was just shy of being 4 when she passed away. Ellie was born July 31st, 2006. From a father’s standpoint, she was a girlie girl — bows and ribbons. She just lit up a room. Everybody seemed to be able to change and act different with her.
Of all the things that she dealt with, not a person went by that she didn’t impact. She never said a word. She never talked or walked or anything but for whatever reason she changed a lot of people and really made people feel thankful for what they had. She smiled all the time. Her laugh was insatiable. You just couldn’t get enough of it. I couldn’t have asked for a better daughter.
I think it’s hard. I mean even now James, our son — he went out to the movies with a friend and to see “Megamind” and now it’s just quiet. We have our really good friends and neighbors who have three kids and they’re constantly on the go — taking kids to this practice, that practice. As hectic as it seems when you’re in that moment, when it’s not there it’s just …it’s hard.
When you have your first kid, you’re like: ‘Wow. What was life like before kids?’ Then you have your second kid and I’m like: ‘I don’t know how I could love the second one as much as I do the first one.’ But then you do. And you can’t imagine life without the two. This is the real depressing part of it. You’re stuck with trying to answer that question: How do I live life without that other one?
Ellie had been sick for so long. It made it quite stressful and I threw myself into work a lot. I would work 12 to 14 hour days, just, I guess, as a way to stay busy and kind of keep my mind off all the things at home. So definitely I’m trying to slow that down and deal with the issues that come up and just make sure I spend time at home with the family as well.
I looked at your 30s as kind of your heyday. This is where you’ve probably been married for a few years. You’re hopefully getting some of that under your belt and your relationship is developing with your wife. You have kids at this point and they’re probably getting to an age where they’re becoming their own person and they’re getting into sports. They still like you. They’re not a teenager yet. They want to hang out with you. And you’re still young enough to do things with them and it just seems like this should be the best time of your life.
When she was born I was 28. When we found out she was really sick I was 30. When I was 31 we were in and out of the hospital all the time. I turned 32 and she died. This has been the worst time in my life. I hate to say it because my son is so unbelievably fantastic. I just got thrown into all this storm of stuff. I would hate to say that I feel like I got cheated because I would never want it to happen to anybody else. Nobody deserves that.
Now my biggest struggle is trying to figure out what the rest of my life looks like not having her. My nephew William was down here the other weekend. He’s about 2 ½. So he’s of the age where he’s walking and wanting to follow around his cousin, James. And James was so good with him — just watched after him like a big brother but also played with him like a big brother. It hurts to see that. At least at this point he won’t have that. We couldn’t give it to him. Those kinds of things are harsh reminders of what our life is potentially going to be. It’s hard to feel like you’re ever going to be 100 percent again. You may be 85 percent, and that’s a good day. But you’ll never be 100 percent. You’ll never have that full feeling again.
I want people to know how bad we hurt because I want people to know how great of a daughter she was. How amazing that, even though we had four years and it hurts like heck, that we were lucky to have her. It makes you feel good that people know that there was this girl, Ellie Kennison, who existed and she was an amazing girl.”
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