Four years ago, we were excitedly anticipating the birth of our fourth child. Brandon still lived at home, Alexis had just finished second grade. Gloria was still a downy haired toddler. Had I imagined a flash forward into the future four years, I think it would have looked much like the moment I'm in right now. Brandon has been out on his own for a few years and still comes home for meals and to hang out. Alexis is a moody preteen trying to navigate the deadly waters of middle school. Gloria is a precocious and strong willed grade school child. As I sit here reading and reflecting in my quiet time, my charming, personable Levi quietly watches cartoons in the other room.
Even though in this moment, things look relatively how I'd have imagined back then (other than we weren't sure yet if we were having a Katherine or a Levi), our world is also wildly different. Our world is wildly different because of how it was shaken by a rare fetal syndrome. It's funny how something you have never heard of can, in an instant, change every aspect of your life.
If you've met us or started following this blog in the past four years, you may not even know what happened in the summer of 2008. I often forget that all that trauma became such a normal part of life for us that many people in our lives now don't even realize it happened. Some people know something happened because they have noticed Levi's hands or have heard a little bit about the story, but they never got the full thing. (If you haven't gotten the full thing, I'm not sharing it here today. Go to Levi's ABS blog and get the full story.)
It's funny how God provides reminders. Just when I haven't noticed how normal the miracle has become my thinking, I'll get a call or an email. "I found your son's blog and we're trying to deal with the same thing, but nobody has ever heard of it." "I know someone who is pregnant and dealing with a rare fetal disorder. Can you talk to her?" "We found you through the Fetal Hope Foundation and we need someone to talk to."
Just last night, I was on the phone with a sweet woman who is pregnant with a little girl with a skull/facial structure syndrome. Even four years later, when I revisit Levi's story in that way, the emotions bubble up again powerfully. It's nearly impossible to take our miracle for granted when God provides opportunities to share the story in ways that provide hope and healing and comfort to other families.
One of the last things my new friend asked me was, "Do you feel like your relationship with God is stronger or changed because of what you went through?" My answer was a resounding "yes!" In the moment, we had to rely on God in a way we never could have imagined. The only option other than reliance on God and faith in His promises was despair. As time progressed, we began to see how God was providing in miraculous ways. It is hard to hear a doctor say, "We don't know how this happened, but the XYZ we saw on the MRI is just gone." and look at your relationship with God in the same way you used to. Going forward, we have our son as a constant reminder of that time. We can look at him and remember that when we were in the valley of the shadow of death, we chose hope over despair, we chose trust over fear and we chose praise over curses and because of it, our lives are deeper and richer in ways we never knew existed. Several times over the past four years I have been given opportunities to talk to pregnant moms who have found out their baby is in danger because of Amniotic Band Syndrome or another fetal syndrome. I don't want to see anyone go through something like our ordeal, but if anyone must, it is my deepest privilege and honor to provide some support along that lonely road.
2008 sucked. It was a very difficult year. We were less than two months into the year when we discovered our family was growing and the first part of the year seemed charmed. Then everything came to a screeching halt on July 1. After fetal surgery, six weeks of bed rest and seven weeks of NICU time, just when we thought things were normalizing, my husband lost his job. And you know what? I wouldn't change it. I wouldn't want to live through it again, but that season was an important formative time for me, for my husband, for our marriage and for our relationship(s) with God.
In our culture, we sometimes see hardships as something to be avoided at all cost. We see the difficult seasons as something to be forgotten and left in the past. That's not healthy. Of course, one mustn't dwell in the past, but to push back experiences and memories or to ignore the way they shape a person is to do a disservice to one's sense of identity and self. While it is dangerous to get stuck in "pain mode," it is dangerous in a different way - a numbing and deadening way - to forget there was ever any pain at all or to pretend that there wasn't. God can and does work through all things to shape us. He can even use pain to shape us in positive ways if we will only allow the molding.