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Transparency alert!
Today I was tempted to "reheat" a previous blog post from years past, to make sure there was something published early in the day so I could move on to my next task. Some may understand why that was so appealing. I'm tired. This morning when I got out of bed those are the exact words I used, "I am emotionally and mentally tired." To those who see me later today, I apologize in advance for looking a little haggard, wrung out or if my attention seems to drift off into the distance at times. Total transparency alert: I sobbed yesterday in a way I haven't in years. Pillow wet with tears and all.
Instead of taking the easy way out and simply re-publishing an old post, I decided it would be better to write something new today. We'll see how it goes, but I make no promises of coherence or linear reasoning. Consider yourself warned, and proceed at your own risk.
When my gaze drifts I'm thinking about my second son, Cooper. He's the chubby, bald, smiley baby God blessed us with back in 2005. He's the son we were told would never walk or see, but who now walks on his own and uses his dark brown eyes to look you in the face when he smiles. He's the son who sneaks up beside you for a gentle and firm hug around the neck. He's the son who began having seizures before he was a year old. He's the son who does not have the ability to use words to communicate, but who understands so much of what he hears. He's the son I had to snuggle to sleep every night for two years because he was so terrified of waking up in an ambulance, riding to an ER. That fear was a result of some past epileptic episodes where that actually happened, once during a family Christmas trip out of state. He's the son who had emergency orthopedic surgery last year to fix a femur that broke during a fall caused by a seizure. He's the son we have taken to see specialists in OR, MA, IN, OH & GA looking for answers, but repeatedly told that he doesn't consistently fit any one diagnosis. He's the son who for the last 12-16 months has been slowly but consistently disappearing behind inconsolable anxiety which limits his ability to get out of the house and leaves him exhausted.
I wept yesterday after holding and snuggling my son for two hours in my bedroom as he cried, crawling out of his skin for reasons that he cannot put into words. When his medication finally kicked in and he relaxed with his favorite fuzzy blanket covering him, he reached up to pull my head down to his tear-covered face for one of his famous hugs and kisses, and then he slowly fell asleep. For those few, brief moments before he rested, my son was back, a bittersweet glimmer of his former self. I wanted him to stay. And I grieved the days when all he wanted to do was hug everyone within reach.
We took Cooper to his doctor last week asking for help. We have more tests scheduled for the end of the month, but we were warned once again that we may not find any answers. We were told we may be left continuing to manage symptoms as best we can. We understand. That's what the last 10 years have been like.
So what does all of this have to do with the Bible Reading Blog? Everything. This morning as I review the Bible passages that I have copied into my reading journal, I am a desperate man, husband, father and friend looking for life and hope. When my heart is heavy and my brain is worn out, these passages shine with new light. What is there for me? What is there to share with others? Several passages stood out.
Passages like Josh. 3:3-4, when Israel is told to follow the presence of God as the Ark of the Covenant went ahead of them into Canaan since they had never traveled the land before and needed to be shown where to go. I'm traveling a road I have not been on before and need to follow my all-knowing God (although there are times the road seems eerily familiar and I despise it).
John 9:3 is always in my mind. It's the passage where Jesus assured his disciples that a man living with physical limitations was going to glorify God's power, and that his limitations were not caused by some kind of spiritual deficiency. Our prayer for all of our children, but especially our special needs children, is that God will use their lives however he wills, and that he will glorify himself through them. Our aim is that by God's grace and mercy, our parenting and shepherding of these special souls will also glorify him.
Psalm 56:8 is especially reassuring. It reminds me that God sees and cares about everyone that is affected by Cooper's situation. He counts every sleepless moment and catches every hurting tear. That means I can cry, and I can question, and I can hurt, and my God hears and knows and feels right along with me.
1 Peter 1:13 provides special comfort, especially when we reach the limitations of medical knowledge or treatment. Cooper is living in a broken body that is not going to last forever. We will do all we can to help his body do all it can. But there are limits. As much as I hate hitting limits, there is so much more for all of us to look forward to. Ultimately my hope for Cooper and for all of us is tied to the coming of the resurrected Son of God and the resurrection body we will one day use to enjoy his presence (1 Cor. 15:50-52)!
Please understand, I don't know what the future holds for Cooper. God may provide answers in the coming months that make it possible for us to address Cooper's physical and neurological condition that enable him to actively participate in life like he used to. It is also possible He may not. Whatever ends up happening, our commitment is to faithfully serve God and others the best we can (Dan. 3:17-18).
Praise God for his enduring, strengthening, guiding word!
Jeremy Dehut
PS As well-intentioned as it is, please understand we are not looking for medical advise from anyone by sharing the limited information above. As I wrote, we have spent considerable time, effort and money seeking answers for Cooper. Over the years God has blessed us with a wonderful team of health-care providers. For now, what we solicit most are your prayers. Thank you!
