Boy do I feel tired right now. It’s not the kind of tired that comes from lack of sleep… I got five consecutive hours last night, which felt pretty freakin amazing.
It’s not the kind of tired that comes after a long day of physical exertion…all of the therapy and errands for today were cancelled.
No, it’s the kind of tired that you feel when you’ve spent an entire day on pins and needles, maintaining as much presence as possible and have poured yourself into being your strongest in the face of great challenges.
For any mother it is stressful when her child is sick. But for most kids, a cold is just a cold. For Oliver, a cold is rarely just a cold. He’s been fighting this latest bug for about four days now but despite an early round of steroids, it has still settled into his lungs- his most vulnerable spot.
Today I spent eight hours straight giving him breathing treatments, taking his temperature, being careful to avoid any spikes that could bring on a seizure. Administering medications, attempting to keep him hydrated and making sure that he wasn’t choking on his secretions. By the last few hours of the afternoon he was stuck in a loop of continuous coughing fits, followed by choking, which then lead to vomiting. This went on for hours.
At one point amidst all the chaos, Nicco climbed up onto the futon and accidently took a header onto the hard floor. I saw it happening out of the corner of my eye as I held Oliver in my arms trying to prevent another round of choking but couldn’t react fast enough to prevent the fall. I ran over and scooped him up. He cried for a few moments then arched backwards in my arms and went silent. I brought him forward and all four limbs flung out rigidly in front of his body. Then his chin dropped to his chest. At this point I could hear Oliver choking on his vomit to my left but there was nothing I could do. It’s moments of overwhelming experience like this that I realize how far I’ve come.
Nicco came to a few seconds later and started crying. With immeasurable relief I hugged him close to my chest and ran over to heIp Oliver clear his throat. The next hour or so was spent vigilantly watching Nicco for any further signs of injury and trying to keep Oliver breathing.
When Conrad got home I relayed the tales of the day and even congratulated myself on how well I’d held it together today. But as I continued to speak, the tears started to fall. I realized how worried I’d been about Oliver all day despite the brave face I had put on. Things snowballed from there and we soon fell into a conversation about life support and the untimely death of our son. A terrifying majority of kids like Oliver ultimately succumb to pneumonia. This is why a bad cold is such a threat in our life.
I know that it’s fairly normal for parents to project into the future with worries about their children. But that’s usually what they are, just worries. In the case of medically fragile children, it’s a very real possibility that some day, you may have to bury your child. It’s a pretty crazy way to live – knowing that at any moment a small cold, which should have been no big deal, could steal your baby’s life. So many families on my support group write ‘Today my angel gained his wings… It all happened so fast. He just got really sick really fast.”
It would only take one time that we didn’t hear Oliver choking for him to inhale his vomit or secretions and that would be the end. We’ve lied awake many nights listening to his labored breathing, wondering if there would be a hospital stay in our future, wondering if he’d beat this one. These are the honest thoughts of a special needs parent with a fragile child. I have talked to many other moms who share these same concerns and have learned that when these thoughts arise, it’s best to honor them and let them out instead of judging yourself and trying to change them.
I know many people would stop me right here and say, ‘But any of us could die at any moment.’ And to them I would ask; have you walked this road?It is a journey that stirs within you the most primal urge to protect your child no matter what, yet forces you to continually stare death directly in its face. You must learn to walk the razor’s edge between maintaining hope and accepting what almost has and what someday might, take your child’s life. It takes a skilled traveler to maintain this balance.
Today reminded me to remain vigilant of the chronic level of stress in my body, mind and spirit. Those tears that fell were from a place of tension that I was completely unaware of until I began talking to Conrad.
The statistics on death and disease for special-needs mothers are rather unsettling, I believe in part, due to chronic tension like this. We have more than twice the risk of death, are 40% more likely to die of cancer, 150% more likely to die from cardiovascular disease and nearly 200% more likely to die from misadventure than other mothers. These numbers are alarming to say the least and I definitely do NOT want to be one of those statistics.
So after allowing my emotions to be free with Conrad, I requested five minutes by myself to take a hot shower and wash off the day. Then I loaded my little sickies up, bundled down with hats and blankets, and took a beautiful walk on what will probably be one of the last cool days in here in SoCal.
Although today was a battle hard fought, I do feel like I won.
And that perspective… is growth.
I always read Oliver’s Odyssey in the evening when it’s quiet. I take my time to read it with understanding. The way you express your feelings through words puts me right in the room with you, wanting to literally put my arms out to help. In this latest entry, I could almost feel that tension you were describing.
Suzie, I can’t tell you what an honor it is to know you. I loved you already because you love my dear cousin, Conrad but after following your journey I’ve learned to love you for who you are. You are strong and resilient while keeping your heart tender and loving. I’m quite impressed by you. Oliver and Nicki are two lucky boys! So is my Cuz!
Stay strong. Love you.❤️
Wow Camille. It’s an honor to know that you take such time and care when reading my entries. That makes my heart so full. I am so glad you’re getting to know the me apart from Conrad and I hope that we can spend more time in person one day! Thank you for all your love ❤