Over the last two (plus) weeks, I have been reeling from our appointment with neurology. We were referred for his hypotonia, which literally means “low tone,” which basically means he’s floppier than your average baby. She also told us that she thought he may in fact have a clubfoot, and that we needed to have it ruled out by an orthopedic surgeon. You know, the specialist we were told we didn’t need to see by our OB, pediatrician, an OT, a PT, and 2 neonatologists. On top of the “clubfoot,” we were told he likely has either a mitochondrial disorder or Prader-Willi syndrome. You are welcome to google those, and what you find will not be good. She gave us orders to take to the hospital lab to have these labs drawn. She warned us that she was going out of the country for two weeks AND our results would take up to two weeks to process, SO we could expect not to hear anything until the first of January. Cue the giant sigh. Cue the,” OMG, why the eff am I having to wait again???” Cue the realization that, “Hey…I still have time to change God’s mind. To ask him to intervene…”
Enter the I’m-going-to-pray-like-I-never-have-mindset.
I have been praying day and night over my little Clark. Every time I nursed him. Every time I changed his diaper. Every time I fell in love with his fat cheeks which amounts to at least 1,000,000 times. You see, for months I have prayed for strength. But I changed my prayers to pray directly for healing from Jesus Christ. “Jesus, please heal my baby. Please let it not be Prader-Willi, but if it is—You are going to have to give me strength.” Over and over and over I prayed these words. I wanted to faithfully pray and beg God to heal Clark. If Jesus raised the dead, healed the blind, and walked on water, logically I knew he could change the course of my son’s life. I needed to pray this over my son with complete faith. Oh. And in the spirit of total honesty, I also had huge meltdowns because despite my faith in Jesus (ever faltering) and whatever anyone thinks, I am a completely weak wreck of a woman. I also had moments where I said it was completely fine whatever the outcome. Quickly followed by a meltdown. Which was usually followed by the sweetest text message, phone call, or e-mail. You absolutely know who you are, and Jesus used you to encourage me in times where I let my anxiety and distress overwhelm me.
Back to this week—
Tuesday, I called and left a voicemail with the neurologist’s office asking them to call me and let me know the results of the tests. They called Ben (not me) and said the results were not “in” and that they would need to call the lab where the tests were being run for the status of the results. No return call.
Wednesday, I psycho-dialed their office for 5 hours and left 2 messages, the 2nd of which was the most desperate message yet andddd I had Ben call them, too. I also called the lab directly and asked if the results were “in”—they were. I also asked for the results but they “could not give them.” FINALLY the neurologist’s office called back, and told Ben the results were in! And that they were unauthorized to give us these results. What in the hell?! You have the damn results and will not give them?! Yep. Can’t because the MD was, “not in the office today.” 😡🤬
I. Nearly. Died. Of. WTH-ness. Cue major meltdown. Like meltdown so hard I ended up with migraine that incapacitated me for the remainder of the day.
A few minutes before 8:00a.m. today, Ben called me and told me that the neurologist’s nurse called him and said the tests were negative! He does not have a mitochondrial disorders or Prader-Willi syndrome.
Let’s recap. Prenatal: His genetic screening for trisomies and sex chromosome disorders was normal. Postnatal: His MRI of his spine was normal. His MRI of his brain was kinda normal. His cardiologist says he’s fine. His orthopedic surgeon says he doesn’t have a clubfoot. His genetic testing came back normal. His metabolic testing is normal. Specific testing for PWS and mitochondrial disorders is negative.
Jesus. Jesus. Jesus.
I can tell you right now that I am a doubting sinner with faltering and imperfect faith. But I can also tell you that God is healing my baby. Not all at once, and not in the quick and perfect way that I would like, but in His time and in His way. I probably don’t have to tell you, but deep down I have always been of the belief that God’s will is absolute and unchanging. That prayer is a platitude that makes us feel better, but ultimately changes nothing because the outcome has been decided by God. And God has taken this opportunity to show me that prayer can change everything, and I thought you should know that, too. And also that my baby son is like Superman. Love to all.