Aging is a relative process. Being vain enough to think that I have aged well, until I look in the mirror, has long ago been replaced by the realization that the accumulated mileage is no longer covered by warranty. Coming up on eighteen years of caregiving for my son, it hasn’t always been easy, heck, it’s never been easy. If not for his smile and the twinkle in his eye when I sing to to him, (well cackle like a hyena is a more apt description, but he loves it!), I wouldn’t have been able to give one hundred percent.
Of course, what was one hundred percent a few years ago is pitiful when compared to today. It’s not much of a paradox, the fact that the more you give, the less you have to give. You need to pace yourself for the long run, but to begin with you cannot know how long that will be and so you give it your all, hoping the long run will teach you to balance your own needs in face of your child’s. I never found that balance, and yet in part because of that, my son is still here.
You’re not supposed to have regrets, so they say, and while hindsight is useful as it can teach us about the future, I wish it could have been different. Now, that doesn’t matter anymore. Now each day the wear and tear on my body tells me, you gave it your all. I find solace in that, where a few short years ago, I couldn’t. The only thing that mattered was making sure my son was comfortable for the next few hours and those few hours would build up to form an unbroken chain until we reached that mythical goal where he felt comfortable, happy, protected for most of the time.
This life though, with a fragile child who was given no chance to live, is not a story of continuity. Not a race to the finish line in a sports car. More like a leisurely drive through the country side in a broken down jalopy and you have no real idea of where you are headed. You learn one thing for certain: if you put it in your mind to reach a specific destination, you will never arrive there.
It appears you can strategize, and you should, but you can’t plan. You react to situations and your ability to preempt will bring momentary triumphs, but any preconceptions about how your life with your children will unfold, is soon exposed for the fallacy it is.
You readjust, you compensate and as far as the outside world is concerned, you put a smile on your face. You accept. You may balk at this idea; the world should know that your child is suffering, but no one is interested in that. They want results, they want positivity. Sometimes you care what they think and on occasion you think, ‘to hell with them’. You have to be true to yourself and to your mission, to provide loving care, a stable environment, that safety for your child to get the most out of a short and hurtful life. In short, you offer them protection. That becomes your meaning. Your child’s meaning lies within showing you what purity is. What the basic element of a profound life is, that unconditional love. How far you take it, is entirely up to you.
Obviously, the more you go to extreme lengths the more you’ll feel it, as time carries on. You learn to find joy, continually, repeatedly in simple things exactly like when a baby smiles for the first time, coos for the first time, giggles for the first time. You find the ability to remain surprised, the ability to remain in awe and bask in happiness each time something good happens. You become a little bit like your child, discovering that happiness afresh, each and every day, as though time has wrapped you in a cocoon, a stateless mind where time doesn’t exist.