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.
It's been nearly 19 months since I first established this blog page. While I had good intentions of writing, the new life that I had acquired with the birth of my sixth child, Noah, was going to take me on a wild ride; one in which, at times, I would not recognize as my own. Noah's Down Syndrome diagnosis at birth was a surprise to us. After having two level II ultrasounds at 18 and 20 weeks, both of which did not show any typical signs for Down Syndrome, we felt reassured that there would be no surprises for us. (The first had shown slightly larger ventricles in the brain, but a second look revealed normal measurements.) We had done no blood tests, not wanting to fret over possible false positive results or a possible amniocentesis (I was 39 at the time). After all, I was to deliver this baby the following February, was homeschooling my 10 and 8 year old sons and 6 year old boy/girl twins, all while keeping an eye on my 2 year old daughter. I was busy enough to not want to be bothered with a blood test.
I guess this is where God and my faith enter the picture. As we arrived to my eighth month of pregnancy, I started to get the feeling that there was maybe something a little "different" about the baby I was carrying. I had an ultrasound sometime after 30 weeks that seemed odd to me. This baby had his head turned upwards to have his mouth against the amniotic sac, making a sucking motion with its lips. I had never seen any of my other babies do that. I made mention of it to the ultrasound tech who replied that she saw it often. Not my babies. I had never seen it. There was something else that I can't quite recall now, but the feelings had been planted. However, I know, without a doubt, that God did not want me to know that this baby would test my faithfulness to Him, and that He held all of what was to come in His hands.
The time to meet our little bundle was growing near. I always had my babies in the 38th week (except for the twins arrival 2 months early, but that's for a different post!). We had two potential boy names chosen: Nolan, a strong, Irish name, or Noah, a (weaker, in my opinion) Hebrew name which meant "peacemaker". My husband and I were going back and forth with which one to choose and decided that we would wait for his arrival. I had the thought of putting the two names in a hat, drawing one, and sticking with it. However, I was scared to do that because I knew in my heart, "Noah" was going to be the name drawn.
I didn't get to 38 weeks, or even 37! I was in my 36th week and knew that I was going to be meeting him by the end of the week. Surely so, I was 36 weeks, 5 days when I went into labor. (That's another funny story for another post! I'll just say that because I had done this enough before, my husband didn't think it was a big deal for me to be serving mac 'n cheese to the little ones, while having to breathe through contractions, as well as get my bags, as he proceeded to get our pastor (who had come to stay with the kids until his wife arrived at our house) connected to the internet!) In just over an hour after arriving at the hospital, I was giving my last push to release my baby from the warm, cozy space in which he had been developing for the previous nearly 37 weeks.
I waited in anticipation of holding him and seeing his little face. He was handed to me, and I looked to take his appearance in. And then it hit me. Wham. Like a ton of bricks. It's as if my vision of the world around me changed. My world had come to a screeching halt while everyone around me carried on with their normal activities after a mom delivers. "Doesn't anyone else see it", I thought to myself. I had lost my voice. I didn't want to believe what I saw. The "look" of Down Syndrome. In my baby. My husband finally came into my space, and I was able to get out "He looks like a Downs baby" quietly to him. "Oh, no, no. He just came out. He's all puffy", was my husbands reply. I knew better, I sat there holding him as shock was settling in. A thought that came to mind as I was holding my newborn son was that I was going to be 70 years old with a 30 year old still living at home. I tried to nurse him right away like I did with my other singleton babies, but he did not seem to know what to do, at all. Another stab.
A nurse came into my space on the other side of me to take the baby for his initial exam. I told her I thought he looked like "Down Syndrome". She said that the doctor would assess him and we would talk after. Stunned, I handed him over. As I sat there, I realized it. "Noah". It came out weakly at first, and I cleared my throat. "His name is Noah" I blurted, without even consulting with Aaron. Noah was the "different" baby that I secretly knew was going to come. There was so much more to him than I could have ever imagined, but God revealed things to me little by little.
Having read, what seemed like random blogs after Noah's birth about experiences of parents of a disabled child , I was able to discover that our stories are very similar. No one expects to have a baby with a disability. It's never planned. It just happens. I believe that it happens to moms that are chosen by God, for whatever reason, to receive these "special" children. But I also believe that it turns out to be a gift so unimaginable. I'm still working that one out, and it may be over a period of years that I become fully aware of how Noah has gifted our family. They are referred to as "disabled" children, but I think I've seen this before; that they are "specially-abled" and Noah has done a lot for our family already.
When I sat down to start typing an hour and a half ago, I had no idea what I was going to write. I like to write, but am not sure that anyone would really want to read what I have to say. I can tell you for sure that I know, without a doubt, that we have Noah in our family for a reason, and I can't imagine not having him. I wrote a song about him near the end of his second month with us, to which, a friend graciously lent her voice and talent. I believe that I will share that in my next post.
