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not letting go hands

People hold dear strong opinions about so very many things. What it takes to have a good marriage, for instance. 


Date nights are a NEED. 
Sleeping in the same bed is NECESSARY. 
Speaking of beds, your bedroom HAS to be a child-free sanctuary. 
Romantic get-aways are a MUST.  
NEVER, ever forget it's your anniversary. 


Just a few strong opinions we've heard over the years. None of this counsel is bad; nor is it necessary.


Jonathan and I rarely have a date night. In the past six months, we've been dinner alone twice. Both times were spontaneous, stars aligning (which is to say, Grams' volunteering) moments. By the end of the day I'm usually too exhausted to go anywhere that isn't tempurpedic anyway. Also, it's hard to find qualified care-givers. Even more difficult is leaving your child behind when they are having frequent seizures, some of which involve turning blue from lack of oxygen. It's not as if we can say, "Now, Trevy, don't you go having any of those blue seizures while Mommy and Daddy are out alone. You know we need a date night to have a happy marriage." 


His seizures and related disabilities have prevented us from sleeping in the same bed for years. We have learned that it is the sleep which is essential, less the where or the how. Before epilepsy, I did the bulk of the night care for our children and we still managed to share a bedroom. Then seizures entered our home, and with them sleep disruption beyond what the parenting books prepare you to endure. I began sleeping with the other children so I'd have emotional and physical stamina to gut it through the next day. Jonathan has always been able to fall asleep more easily than have I. He would wake and care for Trevor through clusters of seizures when he was little, little. After surgery, the seizures were no longer the problem but, oh my word, caring for him during the day was more draining than I can even wrap words around. Nor will I try, lest I discourage others from pursuing surgical intervention. Anyone who has survived the forced normalization stage of recovery (which lasts years) understands exactly what I mean. Jonathan's snoring and restless legs stole my sleep unless we were separate. Now that Trevor's seizures have relapsed and the most serious seem to occur in the middle of the night, Trevor sleeps with Jonathan. My bed is near enough that he can wake me if they last over a minute. This has been the case several nights this month. 


The idea of keeping our bedroom a sanctuary is a sad comedy. Epilepsy is no respecter of  wall, physical or imaginary. Even were he not allowed access to our room, the calls for help would inevitably breech the barrier and we'd go rushing from our sanctuary to rescue our son. At times our bed has been the nearest when he's required a postictal rest. There is no sanctuary from his diagnosis. 


It has been over eleven years since we've been away alone.


This morning, while we were enjoying Trevor's mandatory "in bed til' seven" hour, sipping coffee and chatting, my brother-in-law sent us a "Happy Anniversary" message. Though we knew it was coming, still the day sneaked up on us, and was in danger of passing unnoticed had we not been reminded. 


Reminded that today, in spite of all our marriage faux pas, we've managed to make it 19 years together. Not only have we made it 19 years, he is still the only man I'd want to walk through this journey beside. The meaningfulness is not in celebrating a singular day as much as it's found in not letting go hands in the day-by-day journey though whatever life may bring. I told him this morning that caring for Trevor during the nights is far more important to me than a romantic get-away. Not that it wouldn't be nice. Of course it would. But I am standing here 19 years later, still holding his hand, to speak into the hearts of others whose path has led through the kind of suffering that blows up preconceptions - it is not a need. 


Humility
Compassion
Selfless serving
Forgiveness
Grace
Faithfulness of heart and mind
Grit


These are needs for a lasting marriage. 


I am so grateful for this life we've lived together. We were very young when we said our "I do"s. We've grown up together. We've had an incredibly adventurous life which has included much suffering. But oh how the hard times have drawn and knit our hearts more tightly together. 


I'm planning to make spaghetti and meatballs for dinner. It's his favorite. He's intending to let me go to bed early; which is mine. 


In the morning, we'll wake and grab each other's hands and walk through another day together. 

Comments

Anonymous said…
I agree with you. Nice, but not a true need. I am sorry you don't get more respite than you do. It must be overwhelmingly challenging.

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