My family and I have been going through a very scary time with my youngest son. He has had some medical symptoms that have seemed to get worse. We were told a year ago he needed rest and hydration when he would wake up so weak he could barely lift a cup or spoon. The “spells” would only last a day or so and then he would go months without another. In between these times he has had headaches and dizziness but these too have been sporadic.
His most recent spell was just over a month ago. The pediatrician did a full blood panel workup. All of his tests came back normal so she referred him to a neurologist, who ordered an MRI. The next thing I know, I get a call that my 10 year old is being referred to a pediatric neurosurgeon for evaluation of possible brain surgery. The diagnosis is chiari malformation I. Here is a link with info about this abnormality to save you the trouble of googling it: http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm . He saw the neurosurgeon this past week and I will get to that later in this post.
The myriad of emotions that we all experienced during the days of waiting for that appointment are nearly indescribable. My little guy was actually relieved that there was an explanation for the way he had been feeling. For me, I was terrified of what he might have to endure and so unbelievably grateful that it was found early all at the same time! I posted, shared, text, and emailed asking; begging for prayer for my son! God created my son and my prayers was that He would press His divine knowledge into that surgeon to know what was best for him.
Everyone kept saying “I’ll be praying for him and your family”. Every time I heard that reply I would nod gratefully or post thank yous and please dos, seemingly calm but inside I was screaming! YES PRAY PRAY PRAY FOR MY SON! Don’t just say it because it is a challenging difficult time for us and you don’t know what to say. This is my son; this is my baby. This is something that has no cure. This is something he will have to live with; an invisible illness that to the outside world may seem completely made up. This is an absolute significant diagnosis that breaks my heart for him! So please please please do not carelessly fling out the most overused religious phrase known today “I’ll be praying for him” THIS IS MY LIFE, THIS IS MY SON AND I’M BEGGING YOU TO MEAN IT! PRAY WITHOUT CEASING!
During this time I would go to work and alternate between inward anxious thought spirals and outward quiet tears. I love the fact that I can listen to music while working. I would play songs of comfort and one song kept showing up in my mind, in my heart, and deeply in my spirit…. “It Is Well With My Soul” by Horatio Spafford. (The story behind this song is astounding.) The words began to minister to me. I added a new prayer to my initial prayerful cries to God for my son. I began praying that I would bring glory to Him even during this overwhelming, frightening experience, praying that even my fear would still bring Him glory. I Corinthians 10:31 “So whether you eat or drink, or whatever you do, do it all for the glory of God.”
It started to have an effect on me. I began to feel more at peace in the midst of fear and calm in the midst of confusion as I slowly began to accept whatever we would face with this deeply heartfelt knowledge that God really loved my sweet boy and no matter what it would be okay.
Wednesday came and I found myself staring into the kind, wise eyes of the surgeon. He said that surgery is to only restore cerebral flow if it is impeded by this condition. Based on the MRI, there seemed to be enough space for cerebral flow and surgery most likely will not be needed at this time. He ordered a spinal MRI and flow studies to be done next week to confirm this. This is so incredibly reassuring and solidifies that those prayers from all of us have already begun to work in my son. And I will say this without any hesitation what so ever and scream it: TO GOD BE THE GLORY! And yes please please please keep those prayers coming!