Paradox: What is it like?

“It’s a shame to feel that way, because people have assigned us these singular emotions, although that is not how life works…why is it that we expect people to just be one dimensional?” – Bozoma Saint John

Our Canadian weather lately has been quite paradoxical; one day I’m hanging my laundry outside in the fresh spring sunshine while my crocuses brighten the brown earth. The very next day they are covered in snow being blasted by ice pellets while it’s thundering and lighting; the following day glorious sunshine beams down on a gorgeous sixteen degree spring day. The crocuses adapted and carried on blooming despite the extremes. 

So, what is it like being the parent to a medically fragile child? What is it like to live with Rett Syndrome and Intractable Epilepsy?

It is hearing giggling coming from my daughter’s  bedroom in the evening, discovering her older siblings are “serenading” her with pirate songs from Pirates of the Caribbean. She loves her brother’s low voice and presence nearby as he’s often gone, busy with the life of a young twenty year old. Her sister is snuggled in beside. Those fleeting precious moments I want to grasp like a wish in the wind, and keep forever.

It’s looking into my daughter’s eyes as she has the most desperate, earnest look that is silently willing me to understand “Help me!” as she cries and screams in pain, from an unknown source. Something that can come with Rett Syndrome is called Dystonia. It is a movement disorder that makes muscles contract. Think of the pain of  a charlie horse that just won’t go away and no medications can touch the cramping discomfort. Scarlett has it in her feet and it’s starting to affect her hands as well; recently I came into her room to see her legs spasming and writhing in excruciating pain. Eventually a foot massage, medication to relax and a favourite show helped her calm enough until it subsided. It is the most helpless feeling, watching your child in agony and there is NOTHING you can do. 

It’s seeing her triumphant glee when she spelled  “M-O-N-A” for the first time, telling me it’s the movie she wanted to watch. Moana used to be one of her favourites. 

Moana is also responsible for the fact she rarely says “Thankyou”. It’s always “You’re Welcome!” when I ask her to thank the speech therapist or her school tutor before they leave. 

(I blame Maui for  this generation’s lack of manners.) 

It’s trying to snatch an opportunity to keep on top of all the minutiae of things that need to get done just from daily life, like returning a book to the library, and realizing it’s due.

Darn! I have no nurse and it’s just Scarlett and I home.

I figure, surely I can make it there and back in only about twenty minutes. I should be ok.

So, I proceed to load her in the van, head downtown to our local library minutes away only to have a seizure sabotage things just as we’re about to head home. 

What should I do?

I had forgotten her oxygen tank which is needed during seizures. My only option is to head to the hospital or home. They’re both equal distance; I opt for heading home. 

It’s not enough. Her head lolls forward as another spasm grabs her body, arms and legs shooting forward. It’s a big one, and the minutes are ticking by. 

I pull over into the Home Hardware store parking lot and climb in the back to keep her airway clear and administer the rescue medication she desperately needs. 

Finally it calms. 

Her head is still lolled forward in exhaustion and nearly passed out from the strength of the drugs administered. I need someone sitting beside her to hold her head up and watch her closely. 

But that’s not an option.

There is no one else. 

So I prop her head as best I can, return to the driver’s seat and proceed the last few minute’s drive home. 

I’m exhausted.

But dinner still needs making.

It’s being so incredibly proud of the empathetic, understanding, compassionate people my older children are becoming because of having Scarlett in their lives.

It’s simultaneously feeling guilty for the lack of presence I can offer them and the amount of added stress they live under as they are a part of the collateral damage of having repeated medical emergencies and strain in our lives. 

It’s watching Scarlett’s friend get out of her chair and sit beside her so she can be her communication partner with her Tobii and then proceeding to grab a blanket from her bedroom because she noticed goosebumps on her arms and with all the tenderness of a dear friend wrapping her in love.  

It’s snapping at my husband in frustration because I’m in a constant state of sleep deprivation (getting up every night to check on her, rotating her to prevent bed sores, swiping her Vagus Nerve Stimulator (VNS) to slow a seizure, monitoring her oxygen levels….).

It’s savouring simple pleasures with him like a latte at our local cafe without any interruptions.

It’s being humbled when a friend leans in to simply listen, even when they know things have been rough and they don’t shy away from the hard parts as my tears leak out.

It’s fighting the green eyed monster of jealousy watching my friends move on in life to the freedom of having older kids that don’t need you constantly and we are moving backwards.

It’s getting a random message from someone who felt God nudging them to send us a gift card to order pizza for dinner that night and it happened to be on a day I’m in the ER with Scarlett for prolonged, uncontrolled seizures.

It’s planning horseback riding for her and having “bad” sessions three weeks in a row. Sessions filled with Scarlett slumping forward from fatigue barely able to sit up in the saddle, while being supported on either side by her Dad and I, but then triumphing on the fourth week when she’s having a good day, sitting up fairly straight, smiling broadly as she bounces around the arena in full enjoyment of a great ride. 

It’s hearing the neurologist tell you your child is at an increased risk of dying from SUDEP – Sudden Unexpected Death in Epilepsy. 

It’s having a community rally around your family and raising over $70,000 to purchase a new wheelchair accessible van. 

It’s learning to be thankful for a simple smile that spreads across Scarlett’s face because I know how rare and hard earned they are for her. Fighting through the side effects of dizzying seizure medications, attempting to calm regular spasms to keep her head still so she can access her voice – her Tobii, and coaxing weakened muscles to hold her torso and head up straight in her chair are all the daily hurdles she lives with. 

I’m also learning to have conflicting emotions and feelings co-exist within me.

Perhaps the poets and songwriters knew a thing or two and I can finally pay attention to their message. When I take notice, I hear it in lyrics, “Am I the Only One?” asks Sam DeRosa, “showing up happy but sad?”

“Well I’ve never been worse, but I’ve never been better… And the more I learn the less I know, but it’s alright…two different things can both be true at the same time.” – Ben Abraham 

Kate Bowler pens in No Cure for Being Human,  “There were moments of suffering that felt unmistakably like gifts.” Living with Rett and epilepsy have given me that as well. 

Life is not all good or all bad. Rett is both devastatingly heartbreaking and also courageously inspiring. There are many high moments and incredibly low moments that come with this journey; how I’m doing can equally fluctuate between the two. Always there is something to be grateful for, yet also something to grieve. Being a parent to a medically fragile child is teaching me the duality of life. 

The little crocuses are the brightest thing in my yard at the moment. They continue shining, sometimes closed as they shiver in the rain, enduring the ice pellets, other times bursting open to soak up and savour the spring sunshine. They remind me to do the same. Good days come and so do bad days; I can continue to bloom in spite of it all. 

Kate Bowler expresses the paradox well: “Life is so beautiful. Life is so hard.”