Is This Love?
Is this love that I'm feeling?
by Jo Kaur, Founder, Riaan Research Initiative
We had a day last week that I would describe as a near perfect day. Until I coughed.
Let me explain.
Riaan rocked the day, it began with his meals. For breakfast, we enjoyed his daily oatmeal, mixed with Kate Farms formula, blueberries, strawberries, peanut butter; for lunch, he scarfed down some chicken curry with carrots, brown rice, yogurt, and avocado; for dinner, we went lighter, with apples, butternut squash, and a touch of cinnamon. We add flaxseed oil, olive oil, and/or heavy cream to meals. He drank several 4 oz bottles of milk throughout the day, and 3-4 ounces of water per meal. All of Riaan’s food is blended because he has difficulties swallowing non-pureed food. His liquids are slightly thickened with a thickener called Gel-Mix to prevent aspiration. We mix in medications and supplements into his various meals and drinks.
Normally he gives me a hard time while feeding. He wants a full mariachi band, dinner and a show, a Vegas-style song and dance routine, this boy. Throw in some story-time, play-acting, the best of dinner theatre for the extra mile. And it all better be good. But on this day, he was fine with just the usual Elmo/Cocomelon songs on loop, with Blinding Lights by The Weeknd mixed in (he loves this song), opened his mouth nicely, and finished nearly 90-95% of all his meals. Pretty quickly too.
Everything was moving fluidly: bathtime, playtime, we had fun, we even had time to go on an outing, just me and him, to our favorite park. I may or may not have foolishly decided to carry him on our 20 minute walk instead of putting him in his stroller, causing my back to hurt but making him happy because he likes to be held. I read to him and his brother together, doing funny voices, and cracked them up for at least a half hour, both laughing loudly, smiling at each other, making the most loving eye contact: Riaan sitting in his Bella’s Bumba chair, his brother Jivan in his bouncer. We did Riaan’s stretches, he wore his Ankle-Foot orthotics for a decent amount of time. By the way, there’s no break in the day for mama bear, except for the 20 or 30 minutes when their naps overlap. Otherwise, once one task is done, I’m off to the next.
I always tell people that caregiving for a child with special needs and now, an infant, is the hardest I have ever worked in my life, hands down.
Not so much intellectually but certainly physically and emotionally. Every day is downright exhausting. There is simply no comparison but I have my Riaan and I’m happy and grateful for that.
But I digress. We make it to bedtime, and Riaan gestures for the blinds to be open. I open them, some moonlight comes in, he cuddles next to me. He is a full-on cuddler, this kid. He put his head on my arm, and wraps an arm and leg around me. He can’t squeeze but if he could, he would have me in a vice grip. It’s just beyond adorable. Anyway, I can hear his breaths quieting, his movements stopping, and I know that sweet sleep is mere seconds away. In my head, I’m already planning my next steps: thinking about how I need to get back outside, pump breastmilk, do some work for Riaan Research Initiative, and feed the baby. The night isn’t over for me. Stop, I tell myself. Enjoy this moment, you’re cuddling with your darling and this time is precious and fleeting, always fleeting. Why can’t we bottle up some moments and make them last forever? Why is time so slippery?
Suddenly, I feel a tickle in my throat. I had home-baked oatmeal chocolate chip cookies with a glass of milk right before, and a piece of oatmeal has become caught in my throat. I become frantic, for reasons you will soon understand. There were no drinks nearby.
Please don’t cough. Please don’t cough, I plead with myself.
As if that ever worked. I cough. Not too loudly. Riaan stirs. It’s ok, I think. It’s ok. Suddenly, there’s more. Loud coughing, a whole orchestra. Riaan is now wide awake, not only is he awake, he bursts into tears. Sobbing and sobbing, he won’t stop. I try to console him, nothing works. I sing, I tell Alexa to play certain songs, I try it all. It’s just a cough, Riaan! I promise Mommy isn’t sick. It won’t hurt you, I swear it. I pretend to sleep, hoping that might inspire him. Nothing. Thirty minutes go by like this, he won’t stop crying. Finally I give up and take him outside. His little brother has also woken up, and Riaan is so excited to see him he almost mauls him. Riaan won’t sleep, he wants to play. Finally, over an hour later, I coax him back to bed and get him to sleep.
I return to the living room, melt into the couch, and close my eyes, thinking: Why did I eat those damn oatmeal cookies?
You see, certain seemingly innocuous things will always trigger Riaan. It’s the strangest thing but they cause him to be deeply upset and cry for an exorbitantly long period of time. These days, it’s a cough - from me only, not anyone else - which is so frustrating given the number of respiratory viruses circulating in the air, and also sometimes you just have to cough. When he was younger, it was the word “yee-haw.” After that, it was the song “Twinkle Twinkle Little Star,” and then the Cocomelon Happy Birthday song. Today it’s a cough. His phases come and go, so for instance, nowadays, the word yee-haw and Twinkle Twinkle no longer trigger him.
Lena Mai, Kian’s mom, recently wrote about how her son taught her patience. Isn’t that the truth! All children do strange things or behave in odd ways at times but when your child is non-verbal and cannot really communicate, it can be frustrating. Why does my cough suddenly bother you, Riaan, when it never did before? Will I ever know?
I remember watching a famous comedian talk about how he had no idea what true love, what unconditional love was until he had his daughter. He had thought he had it with his wife, but then he talked about how he reached up his daughter’s nostrils and grabbed a bugger, no sweat, and wasn’t even disgusted by it. He would do it again and again. He wouldn’t do that for his wife. That’s the difference, he joked.
This is love.
Yes, yes it is. This times a hundred when your child is disabled and/or medically fragile. I think about all the parents in our community who also sing and dance to get their children to eat; who stay up late at night because their child can’t sleep or wakes up every few hours; who hold their children’s hands while they undergo scary medical procedures at the hospital; who work hard to learn every aspect of feeding tube care; who kiss away their children’s tears, holding them close, trying to give them the best life they possibly can under difficult and traumatizing circumstances.
We have so many stories of love in the Cockayne syndrome and rare disease community.
Whatever you need from me, Riaan, I’ll do what I can to make you happy and smile. I’ll yank those buggers out, I’ll change those diapers, I’ll sing, I’ll be patient when you’re upset about my coughs. And so will your dad.
Because, baby boy, this is love. And we love you.
Happy Valentine’s Day.
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