On a July night in 1998, I had just gotten home from hanging out with a friend and decided to plug the telephone line into our laptop, dial into AOL and check my mail before heading off to bed. Those of you who are of a certain age know the struggles we had to connect to the Internet back in the 90s. As luck would have it—or was it fate—Stacy was also on AOL at the same time and was looking for someone online to chat with.
She sent me an instant message, we started chatting, and eventually met in person a couple of weeks later. After dating for about six years, we finally said our “I dos” in front of our family and friends in Hammerschmidt Memorial Chapel on the Elmhurst College campus on September 18, 2004. Just as every couple that gets married, we had no idea what life had in store for us. All we knew at that time was that we were in love and ready to start our next chapter.
In chapter two, or the honeymoon phase as some call it, we were getting used to our new living arrangements, getting our careers started, going on vacations, and just enjoying our time together.
After a few years in the honeymoon phase, we were ready to begin our third chapter and start a family. It didn’t take long for Stacy to get pregnant. We started preparing our small condo (and ourselves) for this next chapter, and then tragedy struck. Everything seemed normal at first, although as first-time parents, I’m not sure we really knew what normal was. From what we gathered from the prenatal appointments, everything was fine in the beginning. I don’t remember exactly when in the pregnancy the OBGYN started to get a little bit concerned that something wasn’t right. After some testing and a visit to another doctor for a level 2 ultrasound we had learned the fate of our first son, who we had named Jackson Edward.
Jackson had Trisomy 18, which is chromosome abnormality in which a child has 3 copies of chromosome 18, instead of the normal 2. Interestingly, Trisomy 18 is also referred to as Edwards syndrome. We had chosen Edward as Jackson’s middle name prior to the diagnosis. Unlike other trisomies like trisomy 21 (Down syndrome), trisomy 18 is almost always fatal. Most will die before or shortly after being born, and of those that make it through the pregnancy, only about 10% will make it past their first birthday.
Even though I experienced it and lived through it, I can’t find the words to explain all the emotions we went through after learning that our first child was given a death sentence. So many nights we just cried ourselves to sleep. I think we cried so much that we ran out of tears, which I didn’t think was possible. Jackson put on his angel wings at just 17 weeks gestation.
How does a couple recover from a tragedy like that? I don’t know if we ever really recovered. The scars of that trauma will always be with us. What I can tell you is that we were there for each other. She cried on my shoulder, and I cried on hers. We talked. And we let each other get angry and scream. Then we comforted each other.
Shortly after we lost Jackson we decided to try again. The wounds were still fresh, but we really wanted to start a family. And just like that, Stacy was pregnant again. We had a lot of the same emotions we had when we were first pregnant with Jackson. This time, though, in addition to being happy, excited, and nervous, we were also fearful and worried. Would this child be joining Jackson in heaven?
Everything looked normal throughout the entire pregnancy, so we thought we were going to have a healthy baby boy. We didn’t know how wrong we were. It wasn’t until Stacy went into labor that we had any reason to believe that something was wrong with James. After her water broke during dinner, she quickly got cleaned up before we left for the hospital. As she was cleaning herself up, she noticed what looked like meconium, which is a baby’s first poop, which normally happens after the baby is born. If a baby poops while still in the womb, it can cause meconium aspiration syndrome, which is where the baby inhales amniotic fluid with the meconium. This can clog the airways, irritate the airways, and injure lung tissue.
When we got to the hospital, we were immediately taken to labor and delivery while we waited for the doctor to show up. As the nurse was getting Stacy prepped to deliver James, she started to get a bit concerned. James wasn’t moving. We didn’t find this odd because James didn’t move much at all throughout the entire pregnancy. The nurse decided to attach a monitor to James’ head, and while she was up there, she scratched his head a little bit to see if she could get a reaction. Nothing. The nurse felt that James was in distress and called for an emergency c-section.
After they pulled James out, we waited for a cry to let us know that he was okay. Nothing. I thought he was dead. The doctor assured us that he was alive and breathing, but that they were going to take him to the NICU for a full evaluation. I only saw him for a brief second before he was gone. Gone as in taken to the NICU, not gone as in passed away.
If you want to read about everything that happened while he was in the NICU, you can go back to the beginning of James’ journey, and this blog, by clicking here. There are roughly fifty “NICU” posts that cover the two months that he (and we) spent in the NICU before he was able to come home.
We knew when we brought James home from the NICU that our lives would be vastly different than if we would have brought home a healthy baby boy. Instead of providing around-the-clock care for a few years, we would be providing care 24/7 for James’ entire life. However long or short that would be.
I’m not going to lie. It hasn’t been easy. Stacy has had a few breakdowns over the years and so have I. But we’ve always been there for each other. Parenting is a team effort, especially when you have a special needs child, and we’re a good team. Don’t get me started on the subject of single parenting because one of the parents wants nothing to do with the child. That is a topic for another day.
Stacy and I have been married for 14 years now; the last ten have been pretty rough. Losing Jackson in 2008 and then going through everything we’ve gone through in the past 8 years with James. It’s a lot to deal with, but I honestly think all of it has made our relationship stronger. Several people have told us that we’re an inspiration. I don’t know what the hell they’re talking about. We’re just two people who love each other and are raising a kid with a lot of medical issues. It’s no different than raising a normal kid. Okay, maybe it is. I don’t know, though. I’ve never raised a normal kid.
If I could give you some advice, this would be it:
- Be kind to one another. Raising a special needs child is stressful. There will be times that you may lose your temper but try not to take it out on your spouse or significant other. If you do, always apologize.
- Try to find some alone time together. We are fortunate to have found a retired nurse that watches James once a month so Stacy and I can go out for dinner, or ice cream, or grocery shopping…just the two of us. It really doesn’t matter what you do as long as you are together and can talk without having to worry about a feeding, or medications, or machines beeping.
- Accept the fact that this is your life, as hard as that may be. It is not the life that you had planned, but it is the life that was chosen for you. Getting upset or angry about it isn’t going to change it.
- Don’t be so serious all the time. There will be a lot of sadness and tears shed. Make each other laugh so that some of those tears are happy ones.
- And above all else, always put the kid first. He or she is counting on you to make the best decisions for them, not for you.
Stacy, I love you. I know our marriage and our lives aren’t what either of us had envisioned, but I’m glad we’re in this together. Happy Anniversary honey.
Here’s a fun fact. Did you know that the 14th wedding anniversary gift is ivory? I decided to go above and beyond. Instead of buying her something made of ivory from the tusk of an elephant, I bought her an entire elephant.
I figured an elephant pillow would be more practical and useful than something made of ivory that would probably just be put on a shelf or tossed in a drawer never to be seen again.
