One year ago today our world changed in a way I hadn't anticipated or expected. My husband, myself and our 2 daughters had just come back from a trip to Texas where we had shared our ministry with a lovely church to find Samuel barely able to walk. Just a few days before he had been complaining of back pain so I instructed him to alternate ice and heat and take ibuprofen. His condition persisted and on May 5th I took him to the first of many Dr. appointments. The first visit was with a physician's assistant who tested Sam for a number of causes for his pain but found nothing. He determined it was back strain since Sam had helped a friend move a trailer only a few days before. We went home and treated his condition as such but he grew worse each day. Finally on Mother's Day he had developed a fever that we were unable to control. I thought it might be a virus; what else could it be? He was only 15 years old and I couldn't imagine a healthy young man having anything terribly serious. Monday came and went with no improvement so Sam was taken in to see another physician's assistant who upon seeing Samuel, turned his care over to the pediatrician. Sam's fingernails and toenails were blue and we had no idea why. More tests were ordered, including x-rays, and we were sent home while our Dr. made phone calls to specialists to determine what might be the cause of Sam's symptoms. Wednesday, May 12, became a blur. We went back to the Dr. to hear about the test results but nothing had come in yet. Being sent home again was frustrating and getting tiresome since Sam could barely walk at this point and we had to assist him in getting up and down stairs. I received a call from our Dr. that afternoon telling me to get Sam up to the Meritcare Children's Hospital in Fargo, ND immediately for an MRI. It didn't sink in that this was serious. I think God insulated my brain because I'm not sure how I would have handled things if I really 'knew' what was going on. He also instructed me to pack an overnight bag. At that time they suspected a spinal injury, perhaps a slipped disk, in Samuel's back. We packed for one night.
Just to keep this post brief I'll give you the condensed version of the next 10 days. After an MRI, CT scan, ultrasound and more blood work it was discovered that Sam had clots in his veins from his knees up into his abdomen. At first they thought he had a clot in his Inferior Vena Cava, the vein that takes blood back to the heart from your legs, but it turns out it's chronically blocked. Over the course of the next several days Sam went into surgery every day to have the clots broken up or removed by an Interventional Radiologist or vein Dr. He was in ICU because of the powerful blood thinners and clot busters he was receiving through IVs. On day 10 we were released but had no idea why his body had done what it had done. Within time we learned he had Antiphospholipid Antibody Syndrome; an autoimmune disorder that attacks the blood's clotting mechanism. He also tested positive for Hyperhomocysteinemia, a genetic mutation that causes the interior of the veins to be rough like sandpaper. As of this date two of my other three children have tested positive for APS as well as my dad. I'll be tested next.
Today I feel many emotions. I feel sad because of how it changed Sam's life but I'm also very grateful that we had such amazing Dr.s and so many friends supporting us and praying for us. It was also a difficult time because people that I thought were my friends and would be there for me in a crisis weren't. At times I felt very isolated and alone but made myself remember that God was always with me and I didn't need hundreds of people surrounding me all of the time. I knew I couldn't see 'behind the scenes' so had no idea who was praying for Sam. I knew people were though. It was hard bringing him home too. I worried that I would do something wrong, something that would hurt him or even cost him his life. I was afraid.
This event not only changed our lives because of the news we all learned concerning our medical history and educating ourselves about APS but it also changed us as a family. We all learned how precious and fragile life is and even if we have our moments when we're angry at one another like any normal family, we know that we shouldn't leave or go to bed with a harsh word on our lips. For me, I think I shut every emotion off that I could while Sam was in the hospital and then I remained on autopilot for the summer since we were hosting teams and doing summer camp for the first time. Reality has trickled in on me slowly over time since it didn't hit me all at once. I struggled through a difficult winter with this being one issue that I had to confront. I allowed myself to grieve even if it seemed that others wanted me to be grateful or get over it. I was always grateful but there are other feelings to feel too when your child has just fought a life threatening battle and has been diagnosed with a chronic illness. Life is not sunshine and lollipops all the time. What really matters is who one looks to when life gets hard.
God has continuously brought me to the end of myself showing me that He is the only one I can depend on and the only one I need. I can be so dependent on people that I stray from leaning on God. Desiring relationships with others is healthy but using them to meet our needs rather than trusting God to meet our needs is not. I still long for fellowship, wishing that I could stand in the middle of a sea of believers singing praise and worship songs but God has me in a place that's different than my desires. And I am learning to be content in that place. Sam's journey has made me confront this part of myself. The worrier in me gets anxious that I might be alone, that I don't have friends or enough friends and that when difficult times come upon me I won't have anyone there to stand with me. But God's word says differently:
You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. (Psalm 32:7-8)
The Lord is a refuge for the oppressed, a stronghold in times of trouble. (Psalm 9:9-10)
When the righteous cry for help, the Lord hears, and rescues them from all their troubles. (Psalm 34:17)
My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. (Psalm 62:1-2)
These are only a few of the many verses that assure us of His presence and deliverance. What do I really believe about the Lord? I believe He'll keep His hand on my son all the days of his life and only the Lord knows how many days he has. I believe that although my heart may fear, God will give me comfort and remind me of His steadfast love. And I believe that God loves my son more than I ever possibly could and will guide his every step so that Sam's life will bring God glory.
One of my favorite verses for when I get anxious over Samuel's health:
In repentance and rest is your salvation, in quietness and trust is your strength. (Isaiah 30:15)
I particularly like the second half of that verse. It reminds me to be quiet, not just outwardly but inwardly and trust Him because that is when I am strongest. I find my strength only in Him. I have none on my own. And He has brought us through many deep waters and treacherous storms! Today I'm resting quietly, trusting in the creator of my son and the God who loves him enough to send His son to die for him. Samuel was named after the Samuel of the Bible because just as Hannah asked God for a son, so had I. Sam means "God heard" or "God listened". I'm blessed because God not only heard me once and gave me a baby boy, God heard me twice and preserved his life one year ago. I pray in Jesus' name that Samuel will do great things for the Lord! Amen!
If you are interested in Samuel's story you can read our journal on The Caring Bridge from last year. I'll probably update it as the one year anniversary of his hospitalization comes closer and after he sees his Dr. for his one year visit. It's found here:
http://www.caringbridge.org/visit/samuellykins
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