illness – families unbroken

Today was the first Easter Sunday I have not been able to physically be in church. I’ve cried a lot this morning. And prayed. And worshiped. And thanked God for loving me anyway. And cried. And prayed. And worshiped. Well, you get the picture. It is my sad cycle. It is the swirling of overwhelming emotion and persistent thought that sometimes makes it way straight to my heart. I am unworthy. I’m not just talking about being unworthy to be a child of God. I’m talking about unworthy to be a mom, a wife, a woman….a person. Worthless.

I’ve had an invisible illness for nearly six years but the doctors didn’t know what it was. After a year and a half, I didn’t know it wasn’t gone completely, just in remission until I relapsed just over a year ago. This time, I was lucky enough to get a diagnosis. Spontaneous Mal de Debarquement Syndrome or MdDS for short. MdDS has spread it’s ugly tentacles into every single corner of my life. Because of it, I wrestle with severe anxiety when my symptoms are high.

Being confined at home, not able to be free and independent as I’ve been most of my adult life has settled in my spirit as a dark bleakness that at times, such as today, has made me feel smothered with worthlessness.

So I tuned in to church live online. The song “Is He Worthy?” was playing, a song based on Revelations 5.

But no one in heaven or on earth or under the earth was able to open the scroll and read it. Then I began to weep bitterly because no one was found worthy to open the scroll and read it. But one of the twenty-four elders said to me, “Stop weeping! Look, the Lion of the tribe of Judah, the heir to David’s throne, has won the victory. He is worthy to open the scroll and its seven seals.” Revelations 5:3-5

And tears began to run down my cheeks. Because when you really think about it, we are all unworthy. There is no one worthy. But today, the very day we celebrate the most holy of days, the Resurrection of Jesus is a reminder that He is! And His spirit lives in me.

Do you battle with feeling unworthy like I do? Worthless? Less than? Because of ______. You can fill in the blanks with so many things… Sickness. Sin. Shame. Mistakes. Weakness. Pride. Fear. We all have the dark bleakness of our pasts, our insecurities, our pain, our inadequacy waiting to smother us. BUT Christ won the victory and His spirit lives in us if we just accept and believe. He is the light and in Him there is no darkness. We are free to let go of that darkness and make room for everything He stood for like compassion, kindness, acceptance, grace and love.

In Him I am whole. I matter. I am worthy.

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!