He gives us grace.
When we received the neurologist's preliminary diagnosis of Spinal Muscular Atrophy for Nathan, it was news that we could not handle on our own. Jay and I just held each other that night and cried so hard that we shook from head to toe. We knew he had it...the neurologist was confident, Nathan had so many of the symptoms...we were going to lose our son. Our only son.
The next few days were filled with tears and sadness as we talked about our plans for Nathan's care, about how we were going to take care of the girls through such difficult circumstances, and about praying that our marriage would stay strong and that we stay on the same page through all of this.
One day about 3 weeks ago, Nathan was having an especially rough day. His grey episodes were frequent, and he just didn't seem like himself. He was unusually fussy all day, and his breathing just looked horrible. I tried everything I could to calm his breathing rate down, but nothing seemed to be working. I was frightened. He looked so sick.
As I laid him in his crib that night, I slowly stroked his head and prayed "Lord, I know that you don't need my permission, but if you want to take our son home to be with you, you can have him. But I ask that you please take him while he is sleeping so he doesn't suffer." I kissed his fuzzy head and wondered if it would be the last time I would kiss him alive.
I was heartbroken that evening, but I also knew that Nathan was in God's hands. I knew that there was absolutely nothing that I could do, but I knew that he would forever be in our Heavenly Father's care. I had known that ever since we received the diagnosis, but I believed it whole-heartedly on this night and every single day since. Nathan was in God's care. I surrendered what control I thought I had over this situation to God.
God gave us grace.
He gives us mercy.
Nathan woke up that next morning, and I thanked God for not taking him in the night. Two days later, he started pushing himself up on his arms again. His neck control improved dramatically. With the help of a new bottle, he started eating more. A little over a week later, he started rolling over again and his respiratory rate noticeably started dropping to more normal levels at times during the day. 2 weeks later, the muscle weakness that had labeled Nathan as "hypotonic" by three different doctors had strengthened dramatically. He was no longer lagging his head behind when you pulled him up by his arms, and he no longer "slipped" when you held your hands under his arms. And the last time I saw Nathan turn grey around his mouth and eyes (something that was happening several times a day) was while giving him a bath...5 days ago. He seems to be a different child now versus a month ago. He is just so strong.
The PA at our neurologist's office called at about 5:30 this evening. She said that they received the genetic tests back on Nathan...a good couple of weeks before we were expecting them. All of his tests came back normal. He does not have SMA. He does not have Myotonic Dystrophy. He does not have any progressive form of muscular dystrophy. All of the tests they had ordered came back normal.
Words simply can not describe our level of thankfulness and elation. Nathan does not have SMA. Those words will ring in my ears for a long time to come.
The Lord has heard our cries to him. He has answered our pleas. He has received our prayers.
We will continue to visit with the Neurologist, the Pulmonologist, and the Physical Therapists until they either find the reason for Nate's unusual breathing or until he starts breathing normally. While his breathing has gotten so much better over the past few days, we still know that it is not considered "normal".
But we don't care what is ailing Nathan. We have had the wonderful privilege to see God's handiwork in our son. We have seen God's hand on our son. We have seen Nathan develop dramatically over the past 3 weeks, and we know with everything in us that that could only come from God. He has been with us. He has been with Nathan. And we know that he will continue to be with our son. For great is his faithfulness.
He gives us peace.
We are on the mountaintop right now, and it is so good. We may be in the valley again someday soon, but we are rejoicing in the state we are in currently!
"O give thanks unto the Lord; for he is good; for his mercy endureth forever." I Chronicles 16:34