It’s been a non-stop roller coaster ever since Bain was sick on Easter. His liver enzymes were raising so we were referred to a pediatric liver specialist. As with most specialists, we had to wait a couple of months to see one. Meanwhile, Bain had many lab appointments to keep track of these enzymes. This little baby was so used to having his blood drawn that he eventually would not even notice when they stuck him. I didn’t know whether to be proud of his strength or sad that he’d grown used to it. So I chose to be both.
His appointment finally came and his enzyme numbers were finally trending down. What a relief! It was just his liver reacting to being sick or something like that. That relief would be a short-lived as that last sentence. His muscle enzymes were high. This created new and much deeper concerns. Off to another specialist. We were referred to a neuromuscular center. This is where the fight for normalcy, sanity, and Bain’s long-term health will begin. We had quite a few months before we were to be seen. It was a relief to have the summer to just enjoy our family. For the most part, this was true.
We had fun at the local amusement park. I got to ride a roller coaster with a sister I was not raised with. It was like we were kids together for the first time. I thank God for that day. We were celebrating my other son ( I have 6 boys) turning 11. His cousins, parents, and grand parents were all there to celebrate! It was truly one of the best days ever! This is also the day I realized the tests were probably pointing out something wrong with Bain.
There were 3 babies there that day, my twins and my nephew that is only a couple of months younger than them. Only 2 babies were lively, active, and enjoying their time that day. Bain was different. He played early on but a little before midday it was “lights out” for him. Lights out is a term I would later find myself saying often. He was lethargic and stared off into space with no recognition of people around him. We continued our day and even tried another trip to the amusement park on another day, only to be faced with the same result. “Lights out.”
We were determined to keep having fun, but never compromising his health or comfort. With two 1 year olds we pretty much don’t get out anyway. But fun we would have, none the less.
Summer came and went. Fun was available to us almost 100% of the time. Bain had to have a hearing test done, twice, because he just was not reacting to our voices or loud noises. Come to find out, he just really loves to ignore us. I guess I should feel relieved. Other than that, we had a great time to just be. It was nice.
His appointment with the specialist came and would actually be six different appointments. A very long day at the Children’s Hospital would include the neurologist, cardiologist, nutritionist, and another appointment that they would cancel. Blood would be drawn, his heart would be tested, and his motor skills would be observed. We would later have him get an EEG to make sure his “lights out” moments weren’t from seizures. Mostly, everything turned out beautifully. Except for his muscle enzymes. Darn it! So he ended up going under for a muscle biopsy. This is definitely where God stepped in.
I thought I was going to be a wreck, an absolute mess. This was not the case at all. The same calmness that swept over me when he was in the trauma room was with me in the surgery waiting room. I have no doubt that the Holy Spirit was truly being the Comforter that day. I also have to believe this is the same God that saved my son; I must. Now, I’ve been told to have more faith that He will heal my son. I’ve been told the Jesus can and will fix this if I just believe. What a bunch of bologna, if you ask me. I do know, however, that I do not know. I do not know if Bain will receive another miracle. I do not know what the outcome will be. I do not know what the purpose of this is. I just know that I do not know and that the Great Mystery is welcoming us into the Flow. How beautiful is that?
Bain did well in his surgery and now we wait for the diagnosis. 5-7 more weeks of waiting. Waiting is not my specialty. Just another opportunity to grow.