Welcome to what I fully expect to be a long list of random ramblings, some of which will hopefully help someone along the way.
Let’s start with the obvious question of, what’s with the title of your blog? Well, that is indeed a good question! Unfortunately, it is going to take a minute to fully answer, so you better grab your beverage of choice as I try to tell the tale of how we got to where we are, and where we came from here.
We all want and expect the sweet life, don’t we? I know that my wife and I did, and what’s more, we started out fully expecting that sweet life. Although our first few years of marriage were fraught with my frequent work related absences and some very difficult losses as we tried to start our family, we still expected the sweet to come, it was only just a matter of time. Low and behold, we were right! In early 2006, our oldest son JJ entered the world looking just about as big and healthy as any baby we had seen. This is it we thought, finally we had been blessed with a perfectly happy and healthy baby boy! Let the sweet life begin! My personal euphoria lasted just over twenty four hours, right up to the point that my phone rang as I was driving to get all the new baby supplies that a healthy and happy newborn and his wonderful mother could possibly need. The phone call wasn’t long, but it could not have been more powerful. In an all too familiar shaky voice, my wife bit through her worry and simply told me to get back to the hospital as fast as I could without speeding. I can’t tell you exactly what went through my mind at that point, but as I made my way back to the hospital, following all legal speed limits and traffic regulations of course, I only knew that I must get there for my wife.
When I arrived, the first thing that my wife said was that they were getting JJ hooked up and trying to figure out if they could get a flight-for-life helicopter in, or if they would need to take our newborn son to another hospital via ambulance. But what was the problem? He looked so perfect! Well, it would turn out that he couldn’t pass stools and his little intestines where at risk of rupturing. I won’t lie, if you would have asked me to list all the potential problems a newborn would face, this wouldn’t have been one of them. As we waited for answers, my wife and I really learned what it meant to lean on each other for strength. For two weeks our lives revolved around comforting this poor baby who could not consume anything more than a few drops of sugar water. Have you ever seen a newborn who is not allowed to eat for two weeks? Let me tell you, it does not put them in a good mood. Well, after weeks in the neo-natal intensive care unit, our perfect little boy underwent almost nine hours of surgery to correct what we learned was a rare genetic condition called Hirschprung’s Disease. I believe at the time they told us that this issue effected one in seven-thousand babies, but as we walked out of the hospital about three weeks after JJ was born, we surely felt like he was closer to one in a million. This was hard, but we were back on the road to the sweet life.
It wasn’t long after JJ finally started to eat at full speed that a change in jobs caused us to move clear across the country. While this move was hard, we felt that it brought with it great promise and possibilities, and boy were we right! My wife became pregnant with baby Eli shortly after we arrived at our new home. The Colorado altitude, worry about past losses, and fears about the dreaded Hirschprung’s Disease made this a particularly stressful pregnancy. Yet, despite all of this, we stayed positive as we somehow knew that everything would be alright.
Baby Eli was born on a day in September that is otherwise known for extreme pain and loss, but to us, nothing can overshadow the glory of the perfect baby that God had given to us on that day. Eli made a sizable dirty diaper within hours of birth, and I can tell you that I have never been so happy to change a baby! So far Eli was perfect, and aside from a few episodes of spitting up, we could find no reason to worry. We were just about to celebrate finally getting past the medical trials we had seen with JJ, but then Eli spit up again. Oh, and by spitting up I mean that this little guy would drink a bottle, wait a few minutes, burp, relax, then open his mouth and discharge his entire bottle of milk onto whoever happened to be holding him. We asked the doctor about this at every check-up, but they simply told us that babies spit up, and that is completely normal. Ok we thought, this must be what normal babies do. But of course it wasn’t what normal babies do, somehow we knew that, but we had no solutions so we slipped into a world of denial for the next several months. When Eli’s weight gain slowed, they told us that we needed to feed him more, so we did. We fed him more, and he returned the milk to us at an increased rate as well. At the same time Eli started to miss all of his milestones, but again, the doctors told us that we needed to do a better job with feeding and then he would catch up. We even found out later that these so-called medical professionals had put a note into Eli’s medical records saying that his issues were caused by our lack of knowledge regarding infant nutrition.
These issues went on in the same way for weeks, months, and eventually years. These were the times that we really started to realize the lessons that we had learned in that NICU in those first few days following JJ’s birth. I believe that these lessons were used to hone and shape us in preparation for our future challenges and joys.
While we still had no sure answers for Eli, we were once again blessed with another boy to be. While we did have a few scares with kidney function, this little guy was born completely healthy, making dirty diapers, and not returning every bottle we put in his mouth. I will admit that by this time we had moved passed any idea of a completely normal life, but we couldn’t have been happier to have this new little one who was so happy and healthy. Baby boy four came to us about two years later, and like his brother before him, he was without any major issues. By this point we had really started to get into the groove of this whole family thing. While we found ourselves struggling through some serious epileptic seizures with Eli, we also saw the benefit of increased weight-gain because his care team finally gave him a much needed feeding tube. Eli had also made some amazing accomplishments, such as walking at around two and holding his own bottle at about four years old, but it wasn’t until just after we found out that we were pregnant with baby boy number five, Si, that we were finally able to put a name on what had caused Eli’s difficulties. This was really bittersweet news as Creatine Transport Deficiency turned out to be an extremely rare condition that had no real cure or treatment. What was really amazing was that they told us that each baby boy we had would face a fifty-fifty chance of inheriting this disorder. Why was this amazing? We had had four boys and only one had the condition, how lucky were we?
Well, as it would turn out, statistical averages are statistical averages for a reason. Just as we discovered that we were pregnant with baby boy number 6, Ezzy, we also discovered that Si had the same genetic condition as Eli. Well this kind of sucked, but we really didn’t dwell too much on it. We were well on our way to learning how to expect the unexpected, and our little boys were perfect regardless of what they faced. I don’t know whether it was over-confidence, fear, or just our desire to know, but we paid out of pocket to get Ezzy tested for the condition. We honestly felt like this was most likely a waste of money as this latest addition showed no real signs of having any problems. He even kept his bottles in his stomach where they belonged. Just before Christmas we got the news that the statistical averages did indeed apply to us. It turns out that Ezzy, like Eli and Si, does indeed have Creatine Transport Deficiency.
I would like to take a second to thank one specific member of our genetics team. While I won’t mention her name, I will say that having to tell a family that their child has a life changing genetic condition must be hard, but having to deliver that surreal news to the same family, on three different occasions, is something that I don’t think that I could personally do.
Now then, this finally brings us to the name of my little portion of this blog! It turns out that we actually had the sweet life all along. We may not have always been able to see it because we rightfully had our heads down under the toil and strain of our struggles, but as each day goes on we learn to lift our heads more and more. We also continue to learn to appreciate that a bit of salt doesn’t detract from the sweetness of life, but rather it allows us to more deeply enjoy every nuanced flavor that each day holds. I hope that you will continue to join me as I share small excerpts to help others understand that you are not alone. We are certainly not perfect parents by any stretch of the imagination, but we will strive every day to be just a little better than the day before.