As I was standing face to face with a doctor that had just told me that my two-day old beautiful baby boy had a congenital heart defect, the last thing I could be was thankful. We had already been given the diagnosis of clubfeet before he was even born, and now this????
Before he was ever born, I was busy trying to get him set up for appointments for treatment of his feet. Then just two days after they said “he has a ventricular septal defect, otherwise known as a hole in the heart". They told me “these holes sometimes heal on their own, but your son has a rather large hole in his heart.” We will prescribe medications to help his heart do the extra work and to keep the blood that is filling his lungs to a minimum. He will need to have blood test, EKG, x-rays, and ultrasounds weekly for a little while to see if it gets any better.”
I left there and on the hour ride home began to question a God I hardly knew. ” Why God? He is an innocent baby, I don’t understand. Why are you punishing this child for the things that I have done? WHY GOD, WHY? “
It was tough to try to have some sort of appearance of normal life for my 2-year-old daughter. We were traveling once a week to a hospital an hour away for testing just to hear that there is no progress. Every other week we were traveling 4 hours away to have his feet casted at The Shriner’s Hospital in Lexington Kentucky. I was a mess, and didn’t want my daughter to see it, so I would go out onto the front porch and sit on the swing and cry and pray for that hole to close up.
It would take over an hour to feed him just a few ounces of milk because he would get so out of breath. He was a chubby little fellow at birth weighing 8lbs 6oz, but he wasn’t gaining any weight. Every week I would pray that the doctor was going to tell me that the hole had closed up. I was in a "poor me" state of mind while standing in line to get a chest x-ray when someone noticed the casts on both of his legs. A newborn baby with two casts on always got lots of questions. A lady in the line asked me, “what happened to your baby? ” So, I had to explain to her about clubfeet. She said, “oh so your here to get x-rays on his feet? ” I wanted to tell her to quit asking so many questions, I was on the verge of a breakdown right then and there. But, I said “no, he also has a hole in his heart and we are here to see if it is getting any better or if he is going to need open heart surgery. ” She said, “oh I’m sorry. ” Another lady in the line turned around to get a glimpse at my son too, and I was starting to tear up in the pity that I was having for my son and myself, when I noticed she was holding a baby with no eyeballs in his sockets. We chatted a minute and she explained to me how she knew what is was like to be in doctor’s offices all of the time and told me how precious my son was. I held it together long enough to get into the bathroom and I lost it. I started crying uncontrollably. saying, “thank you God that my son has two beautiful eyeballs. Thank you God that he can see. Thank you God!”
After I maintained composure, I carried him down to the doctor’s office to see if there was a good report from the tests. As we sat there the doctor told me that his heart was getting larger, lungs getting fuller, and he wasn’t gaining any weight. He increased his medications, we scheduled a cardiac catheterization for the future to see if he was going to need open heart surgery. I quickly forgot how thankful I was for those beautiful blue eyes looking at me. This was one of those weeks when we were traveling to Kentucky to have his casts changed too. I really didn’t want to be alone with my thoughts for 4 hours in a car, so I asked my mom to go with us. She took off from work and drove us up. When we got there they sent us to the waiting room and I had Nathan all bundled up in his carrier, if I had his legs covered up just right no one asked about the casts. As, I sat there flipping through a magazine and making small talk with my mom this kid full of life came bursting through the doors from the back hallway singing and playing and running. He was running on his forearms because he had no legs! I didn’t want to stare at this kid, but his personality was just so captivating. His face lit up the room! I was so captivated by the life in this child, and I thought to myself “if this precious child can be this happy, what am I moping about?” Again, I thanked God for the legs that my baby boy had and made the 4 hour trip back home in better spirits.
The day of Nathan’s catheterization we found out that it wasn’t any better and he was in congestive heart failure. The doctor told me that we needed to go ahead and schedule surgery for him and that we could make arrangements to have blood donated by a family member for the transfusions he would receive during surgery. We had a month to prepare and that would give us some peace of mind about that. His surgery would happen at Vanderbilt which is another 4 hours away from our home in a different direction. I was trying to make arrangements for my daughter, I didn’t want to leave her while we were that far away and we were given a 50/50 chance of survival for our son to make it through the bypass, the surgery, and the anesthesia. It was something I didn’t want to think about but, I had to. As, I was making arrangements my phone rang and it was Nathan’s cardiologist. He said I am calling because I have sent the results of the catheterization to Nashville and the cardiothoracic surgeon says this surgery needs to be done now! We had two days to get everything together. I had to stop before I could do anything else. I went to the porch swing, and as I sat there, I began to pray what was the hardest prayer I had ever had to say. “Lord, I thank you for my son Nathan. If it is your will, I would love to keep him here and be his mom. If it is your will to take him then, Thank you for the time I have had with him” I really don’t know how to describe in words the feeling that I got after that prayer. I didn’t know what was going to happen, but I knew it was in God’s hands and that was the best place for it to be.
The day before his surgery they were doing all of the pre-op testing and one of the x-ray technicians took him from me and when she took him from my arms my son cried out his first word ever. He said Momma. As he spoke his first word, I cried and prayed it wouldn’t be his last. There was a complication during their first attempt to do his surgery that punctured a lung, and put him on the ventilator for two days before they could attempt again. His chances of surviving the surgery were greatly reduced, and I realized that this was the first time in my life that I was completely trusting God with something. It was a rough week and a half, but the day that they released him from the hospital he let out a shout for joy and a smile that lit up the place!
Nathan is a very healthy 18-year-old young man, that has played football, wrestled, & plays guitar. His name means a gift of God and that he truly is. A few years ago, I got the answer to my question. Why God? The Hole in my son’s heart healed the hole in mine.
No comments:
Post a Comment