Dustin is ill again, his airway is swollen, his breathing labored. We have sat in yet another ER, at yet another hospital, waiting on yet another Respiratory Therapist, to receive yet another breathing treatment that does not work. No Albuterol, No Epinephrine. No one knows how to diagnosis the anomaly I call Dustin Joseph. He is my baby, my precious sunshine, my bottled nitro. No one can tell me what is wrong with him; no one can fix him when he is broken. All I can do is sit back and wonder, wait, and watch. Watch for him to become more and more ill until he lands himself in yet another cold, white, sterile, and uncomfortable hospital bed. Or by the grace of God, pull himself out of it. He has been healthy for over a year now. My guard was down; I began to believe he was a normal child.
Unless one lives it, it is hard to fathom, why anyone would pray each day, to not have to live in fear of losing a child. To know first hand how the blessing of bearing a child could potentially become a heart searing scar. How the a child should never sound like Darth Vader with each inhaled breath. And yet, I did not realize I was not the only one living in fear. Dustin and I took off to the hospital early one morning this week, and by afternoon George still had not had an update. In fear he called me, crying, asking if Dustin was dying. I assured him, he was OK, but until he heard his voice, and could talk directly to his brother he could not be consoled. We are broken; in heart, and in spirit… all of us. As if the whole world shifts off of it’s axis when little man can not breathe.
Logically my mind assures me I am over reacting, and this is not like times before, that Dusty Joe will not get Air Ambulanced to a children’s hospital, that he will not turn blue, or be put on life support. Logically I know he is going to be OK, and yet within the very fiber of my psyche I am a quivering child alone in a darkened corner of a haunted house separated from the loving arms of my parents. I am no longer a parent in control, but am reduced to a humble, wooden, fishing boat tossed out in a torrential storming sea, a product of the bleak and dismal situation, in search of a lighthouse, a master light keeper, and a safe, welcoming harbor. Lost on a private mental plain, a mystical place where logic and emotion battle. Walking through life alone in a sea of familiar faces, holding tight onto an iron rod within a private hell no one could possibly understand.
I do not sleep well when his breathing is labored. He sleeps within arms length of me, a veil of light sleep blankets both of us. For Dusty it is to stay assured I am always there at his side, and for me it is to audibly always hear his shallow breathes. And if he pauses, if only for a moment longer then I am use to I am wide wake, with full dilation of my pupils so that I may visually see the rise and fall of his chest, to look for retraction of his tummy, to see if his tiny nose is flaring out. Even in the darkest absence of light, I can see him as a hawk views it prey. My sight is sharp and keen, and my focus is him. And if he is OK, I drift back into that ever so light veil of rest. Always prayerful for that elusive sleep, only to be granted it, and visited by hellish nightmares. Ones so fearful that I do not even dare utter their visions, for fear of bringing to truth their horrible premonitions. I hate living in fear.
For all the blessings of this life, of all the wonders and heights and possibilities held with in life’s corridors of personal passion… None are worth trading the life of a child you have been gifted to raise. I would hand over my house in a heartbeat, my car, even my career. Within the blink of an eye, without a single moment of hesitation, I would walk away from everything to ensure Dustin would remain healthy.
There was talk years ago of surgically cutting open his tracheal rings, placing a hole within his throat (a tracheotomy) , and letting him heal for 2 to 3 years before closing it back up. I have long since thought of that possibility, especially at times like these. My healthy, outgoing, seemingly perfect child, turned into a home schooled little boy, in a no longer merely perceived, but rather a very real protective bubble. The thought of having to suction him out, and keep it clean with constant dressing changes, and how the routine, mundane tasks of life, within an instant become complicated.
Where would Superman be then, when you needed him most? I stand at the edge of my mental ocean, watching a sunset no others can see. Lost in the realization that I am his only super hero, and my cape has been misplaced. Realizing, that the faith of this one precious child is all the super human strength that I need to pick myself up and carry on. If he believes I can keep him safe, then I can. I am strong because he gives me strength. I am full of faith that this is our right path, a journey hand selected for Dustin and myself. I pray to have the wisdom to balance his needs effectively. To live up to the title of self rescuing space princess, if only for my son. To be able to make him suck it up and drive on enough to raise him into a man, and yet protective enough to fight with a strong enough back bone to tell healthcare professionals when to shove it to get the health care that he needs, when he needs it in order to get him there.
While others immerse themselves in their educations, in there degrees, and levels of wisdom and understanding… we balance our lives on health. We cherish simple pleasures of bike rides at dusk, of quiet walks in the desert, of flowers in bloom, and of hosting good friends over for dinner. I breathe in colors, see depth of character, feel sounds, and envision smells. To some it makes me a dreamer, childlike, and immature. And yet, I choose to take on the challenge of being different, meet it head on, and not waste time looking for a life raft from life’s trials, when I know I can build a better more secure one myself.
I plan for my future, and make provisions for the tsunami’s that I know are out there just beyond the horizon of my vision. I must be financially sound and secure for the day Dustin is not well. This is not a want, or a desire, it is a need on the lowest rung of my own personally tailored Maslow’s Hierarchy of Needs Scale. Scott (my latest ex-husband) never understood my need to be debt free, in fact he resented it. But it is this foundation of fear in which my life pivots upon.
Embrace the positive; pull each opportunity close to you. Let the flow of energy replenish you because you never know when life’s ebbs and flows will begin to deplete you. I know why a friend of mine races his motorcycle at Willow Spring’s Raceway. At 51 years old, he lets his passions fuel him. Racing is his moment of balance. It is why the simple pleasures are worth the very most. To me, my simplest of pleasure, it is one’s mind and one’s time. Sharing your most valuable possessions…yourself, and your time with someone, is the world’s most sacred gift.
Being Dustin’s mother in times of respiratory distress kills me, and drains my very soul, but being his mother everyday of his life fulfills me beyond a measure that can never be truly depleted. I am a stronger person for having the blessing of getting to raise each of my sons. I am only who I am because of them. They do not define me, and yet they greatly enrich me. I am the flower, and they are my roots that bind me to this life. Without them I would never flourish, for they grant me the avenue of sustenance with which I survive. We all have a story, pieces of a puzzle that make up a unique and precious life. Mine is just as complicated as yours, it is no more special, or tragic. I am who and what I am, I am just me. When I am weak, I am broken and shattered, and when I am strong, I can deal with anything, and take on the world.
Get Well My Precious Son…I love you, Mom.
Absolute Chaos! I apparently stepped into an alternate reality and well, here I stand in a vortex of chaos. The spiral of intrinsic forces beyond my limited control. I am a slalom skier traveling at a neck breaking pace down a very slippery slope, dodging one trial pole after another in rapid succession, only to be met with yet another one within millimeters of my face. Problem is, I never learned to ski, let alone have a practice run!
