I am sitting at the computer mentally logging how we are going to motivate, rally and cheer on friends and family to raise money yet another year to find a cure for our boys. I tap-tap-tap on the keyboard working to find the right words to express my heartfelt emotion. Awe. Inspiration. Heartache. Moments of my boys' reality swirl together with words like "hope", "life expectancy" and "better days ahead". As the writing and thoughts take hold, my mind clutches all the images in a day...
Every day feels like a grind.
Because it's just life, I sometimes forget what an actual grind it is. The medical equipment.
The repeated, daily sterilizing of said medical equipment.
The loads of medications. Oh, the medications.
The mountain of insurance paperwork.
The doctor's calls. The stress every time I see Dylan lick something that could potentially make him very ill... he has no idea.
And the listening. Listening very intently for illness. Listening for coughs and how they sound. And in this house... which kid was the one coughing?
I think about how Michael's congestion has worsened over recent days. I walk up to Michael's door in the early hours of the night to check on my sleeping angel. Before I can even begin to crack the door, I hear his gurgled breathing. It is loud and sounds downright uncomfortable. A sea of smothering snot is audible and there is very little I can do to help him.
My shoulders shrink up as I cringe. I close my eyes and gently touch his sweaty forehead. He is not feverish, thankfully. Just too many covers on this unseasonably warm spring night. His brightly colored plaid quilt is shoved at his feet, but his blanket and sheet are cinched up to his chin. I gently loosen them and pull them to his hips, so Michael can cool off. His favorite Bumblebee Transformer pajamas shirt is revealed. Yellow and black. A good superhero fighting evil against the clock. To save the world.
I remember what it was like to be a kid and have a cold at bedtime. I have always hated going to sleep with a cold as a kid and as an adult. The pounding sinus pressure and the shifting of the congestion from one compartment of the sinus cavity to another. As a miserable allergy sufferer in the spring, I distinctly recall even on cool summer nights having an awful stuffy nose and not being able to comfortably breathe. But honestly, I can't imagine what it's like to have my sinuses and lungs filled with extreme congestion.
Friends who are adults with CF have equated it to breathing through a straw. Or never truly feeling satisfied when they breathe in. Searching for a deep breath, they no longer know what the sensation is any more.
Michael's eyes are closed. He is peaceful in the sounds of snorting, sniffing, and bubbling. I can only hope that he is peaceful all night and gets much needed rest.
The morning greets me with Dylan announcing "Mornin' time. Mornin' time." I crack my heavy eyes and look at the clock. Humph. 5:51. He climbs into bed with me and demands juice and wants to watch shows. Poor kid needs a diaper change beyond words. Groan. My husband is out of town on this morning and so Dylan plants himself comfortably on my husband's side of the bed with no complaints. I make him lay quietly with me for another few minutes. Even if for principle's sake to get the clock to pass 6:00 am. I cannot justify getting up with my kids before 6 am.
After some time, he trumps. It's now 6:31. After I have changed him and offered him a sippy cup of diluted juice filled to the "tippy top", he is satisfied. I crawl back into bed and try to slip back into my groggy light sleep.
Minutes later I hear it... Deep. Chesty. And breaking.
Michael is awake and coughing in his bed. I pause and stay very still listening. I zero in with my ultra-high-tech mom radar listening device by fading down the Backyardigans music coming from the TV and the grumbling, stammering dog. Little footsteps, metal clicking, footsteps coming closer. More coughing that is getting louder.
Michael arrives in bed with me and Dylan and he works to curb his coughing. I can hear the crud lodged in the tiniest recesses of his sweet little lungs. At least with the coughs I know he is moving it around, which is part of the battle. Then there is the "getting it out" and the controlling impending infection. Translation: Calling the doc for meds. He is pleasant and cuddly. I feel him shift downward firmly and settle into laying at the foot of the bed.
Once the next show has wrapped up, the vibrant green numbers on the clock report, 7:08.
We all hop out of bed and head downstairs and begin our day with respiratory vests and nebulized medications. Same morning drill. Same grind. On this morning, the gears in my head calculate the timing of the day to get in extra treatments. It is imperative that we break up that cough.
In my reflection of the morning at the computer, I glance at my watch. Oh no! It's time to go get Michael from school. I bolt up from my daydream. It's now a race to get Dylan in the car and strapped into his carseat to make it on time for Michael's pick up. The next day he would start antibiotics for the continued sinus trouble and cough that is now plaguing him.
Days later, we find ourselves on a lazy Sunday evening embarking on a family walk. Our bellies full of dinner, (honestly, the boys' bellies full of high fat custard-style yogurt, but never-the-less full), we decide a walk together would do us good. We start off awkward and fragmented. Pausing for the boys to look at goregous spring flowers like dandelions and then again for the dog to do her business, we can't seem to find a fluid stride.
It isn't until the boys are super wild and distracted that I decide to walk ahead with the dog and Michael. I leave my husband back to wrangle Dylan, and propose to Mike that we have a good run the rest of the way home. He is argumentative and finding excuses, no matter, I begin hastening my stride. He starts to run too. The dog is loving the jog and soon enough we are a pack fully running together.
Michael slows and complains that he is tired. But I know better. I challenge him we run a bit farther and then I suggest we make it to the bend where we turn onto our street. We race all the way to the street sign. I am listening again. He sounds clear. He seems good. His words say he is tired, but all indications are that this boy is doing good with the exercise.
We finally arrive at the narrative street signs and we pause to look a back and search for Daddy and Dylan. I suggest to Mikey that we can turn onto our street to walk home since I know he is tired. "No, Mommy. Why don't we run?!" he exclaims. I smile and say, "Well, I know you are a GREAT runner, but it seems to me that you were saying you were tired, so maybe we should walk." His blue eyes dance against the gray overcast sky. There is a sparkle and his lips curl up with a sweet smile. "No, let's run again." And so we do.
We begin down the long street in a good even pace. We discuss how he trick-or-treated at these same houses months ago in October. "I think I got ten hundred candy that night," he recollects. I myself remember the family of deer we saw as we slowed and crouched to watch them pass, just maybe a 100 feet from us.
Then suddenly Michael says, "Mommy, look! We have only a minute and twenty seconds! I am watching my timer on my phone. They are catching up we better hurry if we are going to win the race." I start laughing in my faster, airy breath as we jog. This kid is challenging himself. He is keeping his own timer. He continues to give me status reports all the way down the street on his imaginary stopwatch - sometimes the time even ticking backwards. At four, he loves math and time, but is still learning the concepts fully. Whatever the case, I am loving the energy, excitement and enthusiasm of his appreciation of the jog together. It is pure joy.
My running mate, trusty pup, and I all arrive at our driveway. Michael exclaims, "We won the gold medal! And we beat Daddy and Dylan." I remind him about being a good friend and about sportsmanship. We are not spent, but feel great at getting our blood pumping. We ran the last stretch, probably a good 5 minutes - a long way uninterrupted for a 4 year old. Back all the way to our driveway. My radar detected no coughing. No complaining. I can't believe it.
As the days pass, the grind is exhausting. On all of us. In many ways, the grind keeps us going. And yes, the clock is indeed ticking. In my private moments, I can see through the lenses that remind me that each day is precious. Each breath is so irreplaceable. There are the moments where I feel like the sands are slipping through the hourglass as scientists in the lab try to work and rework that cure for my boys we so desperately need.
But in this run, I find something new. Alive. And beautiful. My son's stopwatch is ticking. Is it ever. It becomes clear to me that he is running his own race. On his on time. He is setting his own pace.
And winning.
Every day.
No comments:
Post a Comment