Pure Love (Noah's Song)

I have to admit, I have been nervous and excited over finally getting to this point, as I have been looking forward to sharing my song about Noah. I believe my thoughts and feelings are very similar for any mom who has a baby that is born with any condition that will cause their child to be mentally or physically handicap in some way. That is not what moms dream of or fantasize about while we are carrying our growing and developing babies inside. I pray this song spreads to as many people as possible, that it may minister to many hearts. Here is a bit of the "back story".

As I wrote in my previous post, my husband and I were welcoming our 6th baby, into our family, believing it would probably be our last since we were both, at the time, 40 years old. The pregnancy, labor, and delivery were relatively uneventful, and we welcomed this baby as another compliment to our family.

Our joy seemed to last only moments, when the doctor handed him to me shortly after his coming into the world, and I gazed at his tiny face for the first time. I immediately saw characteristic features of Down Syndrome. My world came to an abrupt standstill; shock was setting it. All I could think about was the baby I thought we were going to have, and everything that would be "wrong" with the one we had now.

Our baby, Noah, was born with a cardiac defect as well (a hole between his two ventricles was the main problem), but we didn't know that at the time of his birth. So when he was not able to keep his oxygen saturations up where they were supposed to be, we were sent to a larger hospital in southern Maine, one more equipped to diagnose and care for his special needs. He also turned out to have feeding issues, and we ended up spending the first three weeks of his life at that hospital. While we were there, many nurses and others who came in contact with our baby were always "ooohing" and "aahhing" over him, telling me how adorable and handsome Noah was. I had a hard time seeing it; all I could see was Down Syndrome.

After finally bringing Noah home to live with his five other siblings (the oldest of which was just over 10 1/2 years old), we became accustomed to making multiple trips to and from his pediatricians office, having multiple people in and out of our home tending to Noah's needs, as well as the rest of our family. We ended up back at the large hospital again, when Noah was almost 7 weeks old, after Noah caught a cold from a sibling. This exacerbated his heart failure that had started the previous week, bringing him closer to death than I care to recall. By God's grace, I was able to see a common thread running through all of the interactions with the various people in Noah's life; that he was, without a doubt, special (and adorable!).

It had suddenly hit me, with that most recent hospital stay, that Noah was having an impact on people in ways that I was not meant to understand. God had made that so clear to me, through every step of the way with Noah so far; that there is something so much greater than myself in my life at work. It was God's work happening.

Because of Noah's heart issue, he slept. A lot. And this contributed to his feeding issues. I was devastated over not being able to breastfeed him, which was difficult to accept after nursing my other five children. Noah had come home from the hospital with a feeding tube in his nose. From the first day of arriving home with him, I had to watch the clock to make sure he was fed every 3 hours. "Cardiac babies" (as they are commonly referred) are infamous for not gaining weight well. Their little bodies expend so much energy with just breathing and growing.

So, this meant setting my alarm clock for midnight after the 9pm feeding (which meant sleep maybe came by 10-10:30pm after the infusion and cleaning of the equipment). The alarm would then go off at midnight, and 3am, and (well, you get the picture). My husband and I shared the burden, but he was working his forest management business too, and sometimes he had to do field work for a day. He would need a good sleep the night before and would be worn out from being in the woods the next night, leaving me two nights of going it alone. It was a brutal schedule to keep for about 8 weeks before we were allowed to let the 3am move out to 4:30-5am. Noah almost never woke up. But it all paid off well for him because he went into surgery at 4 months of age rather plump. His cardiologist was impressed, and even referred to him as "fatso". If it had been anyone else had called my baby that name, I would have taken strong offense. I was just thankful to God that he had some reserve (and a really good cardiologist).

God helped me to use this time to bring me closer to Him, my source of strength. This middle-of-the-night time was when I did a lot of journaling and reading, and listening to our local Christian talk radio station. I knew exactly what was on all through the night. I was comforted so many of those 3am times by Charles Stanley, one of my favorite radio pastors.

I had also recently learned that 90% of prenatally diagnosed Down Syndrome babies and countless other "defective" babies have their lives abruptly ended, while still in utero. These babies are not given a chance at life, not given a chance to make a special impact on their parents, families, and others around them, had they been born. While "imperfect" in the worlds' eyes, God does not make junk. Every life has a purpose. It is my prayer that this song may have an impact; whether it's a family that has received a prenatal diagnosis of expecting a "less than perfect" baby, or to touch the heart of a struggling mom, as I was, with having a child they didn't expect to have. These children are gifts from God, created to bless others, and bring glory to God. I'm thankful for the time I spent with God all of those hours without sleep in the middle of the night. He showed me more of who He is, and gave me these words, and the beautiful voice of a new friend to make it a reality. I'm so thankful for the gift of Noah in my life.