It begins first thing in the morning, you hear your child call out. This isn’t a normal yell; it’s a guttural croak, yelp or groan. Your eyes snap open with a start. It’s not like you were in a very deep sleep, anyway. You hurriedly make your way to your little one’s bedside, more calm about this occurrence than you EVER thought you would be, only to find their gaze fixed, eyes wide open in the dim light and tiny body wracked in rhythmic motions of yet another seizure. You immediately break out the support equipment: oximeter, BP cuff, suction, thermometer, oxygen…and get to work. Like a college-trained nurse, you methodically and studiously, go through the requisite triage, making sure all vitals are within, ‘survivable’ range. However, you are not a trained medical professional, you are not even a first responder, in the legal sense, but in a literal one you are not only a first responder, you are the ONLY responder…you are the Mom or Dad, of a medically fragile child with a seizure disorder.
You set up the oxygen tank and mask, go to the medicine cabinet, the one specifically set up for your at-risk child, and meter out a dose of rescue medication. You administer it with the same calm reasoning any emergency room doctor would, under the same dire circumstances. Tenderly taking your child’s tightly clenched fist, you impatiently wait for the rescue meds to take effect. Looking at the clock for more than just for a time reference, you are counting respirations and pulse. It’s 2:36a.m., and the meds have finally taken effect. Deep, easy breaths have finally replaced the choking gasps for air. Going about tidying the room full of medical instruments will hopefully ease you back into a restful state. You head back to bed, exhausted, and just lay there. It’s too quiet…I can’t hear my child breathing! You launch out of bed once more, frantically rushing to your child’s bedside. You watch their chest for movement, but it’s too dark to make out subtle, shallow respirations. You bend down, really close to your little one’s face, and trying not to wake them, listen for signs of life. You feel their warm breath on your cheek, and smiling, swallow hard. Not this time. Not. This. Time. You feel a bit foolish and chastise yourself in the dark, for being so reactionary. The little voice in the back of your mind, however, reassures you; it’s the right thing to do.
Now it’s YOU who’s heart is still racing with respirations much too quick for this time of night. You are wide-awake and it’s only 3:02a.m. Maybe it would be a good idea to just stay up and get ahead of the laundry. Three loads later, washed, dried and folded, you decide a cup of coffee is in order. It’s now 6:00a.m., and the morning routine will start soon. Meds, tube feeding, a diaper change…all before your precious little one opens their eyes.
You never thought you could get used to the idea of a feeding tube and Mickey button. Not only have you accustomed to the idea, you now look at it with newfound respect. You can feed your child, administer meds, and check the status of their stomach contents, all without waking them…if you are VERY careful.
The other kids are now up and jumping about, and you ask them to please hush, as their sibling has had another rough night. They all look at you with great understanding and wisdom, well beyond their tender years. Nodding their heads in apology, they tiptoe out of the house, solemnly on their way to school.
You sit for a moment to contemplate the look you just witnessed on your ‘able-bodied’ children’s faces. How do they understand? How have they come to cope so well with this new and trying situation? I mean, seriously…HOW? When I go to the market to do some shopping with my special needs child, not only do I get strange looks, but many times, rude comments. How can adults be SO callous and judgmental of a disabled child? How can they NOT know their rude stares and cutting comments are setting their own children up for the same bad behavior? Still, I think about my children’s knowing looks, kind words and tender strokes for their sibling, and breathe a sigh of relief.
Thoughts wander and are brought back into keen focus when a joyous squeal emanates from the other room. It’s time to begin the day, and you are glad to have gotten a head start on the daily chores.
Morning meds consist of crushing half-a-dozen pills of multiple compounds, together, and mixing them with yogurt so they will pass easily through the g-tube. You oh-so carefully scoop them into a large, catheter syringe, and set it aside. Grabbing three more syringes of various capacities, you draw up the liquid meds for the a.m. dosing. By now, the yells from the bedroom are of an impatient nature, and you know, you better get a move on.
There is a diaper to change, as well as all of the linen, but the soiled sheets can wait, while my precious one, won’t. A bit of fun, stepping into the living room, and the gym mat that takes the majority space, kindly accepts its burden from my arms. More squeals of delight fill the air with a new day’s joy.
The extension tube is deftly clicked into place, and the morning med sequence begins. Each syringe will be emptied directly into the stomach, via a Mickey button placed in a surgical hole, or stoma, in the abdomen. This will be followed by liquid nourishment from a can, to be chased with a water flush. Placing the necessary medicinal administration devices aside, you begin the most important procedure of the day …snuggle time!
Kisses and hugs, cooing and making funny character noises are among the prescriptions for every medically fragile child, of any age. This bonding time is easily as important as any of the doses of seizure medications. This is face-to-face…heart to heart, time. This is where the subtle communication skills between child and parent are meticulously honed. Only in this case, you must bump it up more than a few notches.
Next, we have bath time, cartoon and reading time, right up to the noon hour. Now imagine, if you will, each one of these daily rituals being accompanied by multiple, violent seizures, breaking the flow of whatever is going on, to stop for the moment, and put the nurse cap on. If you are lucky, it is a relatively brief one, and you continue with the daily routine. If not: machines, meds and more maddening seizures. You curse the ‘seizure monster’ every time it rears its ugly head. You know the alternative is much, much worse. So, you pray that this one will be brief and not do as much damage to the brain, as you know they all do.
As the parent of a special needs child, what you DON’T do is wish for another life. You don’t wish for a different, healthier child, one that will rise in the morning and run, skip and play. You are exceedingly grounded and realistic. You live with the visceral knowledge; tomorrow may not come for my child. Consequently, you stop wishing for the life you planned, and start living the life you know…this one. Your wishes are replaced with something far more satisfying and powerful. Hope and Faith. These are the two most powerful prescriptions in the medicine cabinet, for a special needs parent. Take two and call me in the morning…and the next…and the next.
It’s just ‘one day at a time’, in which special needs parents and their children live. Many parents of at-risk children go through the entire day, holding their breath. It isn’t something that is consciously done, but circumstances sometimes dictate such actions. The frustration of parents who are valiantly leading the fight for their child’s very survival, is painfully obvious…and so is the joy…yes, joy.
If you, as friend, family or stranger should occasion to witness this, set aside your personal discomfort and reach out to them. Let this parent know you share the same hope and faith they do. There will never be a better time to show your humanity, than at that very moment.
You may begin sharing a joy…you never knew existed.