Rainbows and Unicorns, Surfing, My Baby.Posted: March 13, 2013 Filed under: emotional stuff, personal growth | Tags: Down syndrome, Family, Health, Motherhood, Parenting 18 Comments
The roller coaster has been strong lately. I’m on an every other day cycle. One day I’m pretty happy, LP seems to be doing well, I’m thinking about the days when I was so sad, past tense. I call that a rainbows-and-unicorn day.
The next day, I’ve been told that LP likely has severe sleep apnea, or possibly autoimmune related thyroid dysfunction, or aspiration that might lead to pneumonia… yeah. It is still possible that LP will not have a single one of these things. It is also possible (but unlikely) that LP will have all of these things. That, friends, makes a mama tired. Not sleep deprived tired (although my obsessive internet research gives me some of that variety of tired as well), but the other kind of tired. Tired in the heart. Tired of thinking another sad, scary thought about my baby’s health or future. Tired of digging my way out of that sad, scary thought. Tired of thinking about how long it has been since I had pondered said sad, scary thought.
When we first were thinking LP had Down Syndrome, I had a friend going through some very hard events in her life as well. We met one day and went to the beach together, she told me what had happened to her, and I told her about LP. We sat, watching surfers float on the Pacific Ocean, cried together, and wondered what our futures held. I watched those surfers carefully that day, all at once so powerful and in control, but also completely beholden to the water. I watched as some tried to catch their waves too early, too late, the wrong angle, resulting in their boards slipping from under them like a thin piece of paper, scuttling in the wind. But if they did it just right, the energy of the ocean’s edge would push them along, their boards sliced along, careening the surfers’ bodies through a tunnel of water.
I’ve never learned to surf, but I’ve always been drawn to it. I like the dichotomy of surfing. You need the strength to control your board, tame its path through the water. Yet, resisting the path laid out by the water is probably futile, so you use your strength to navigate what is already there, listening and feeling for where the water wants to take you, when it wants to take you.
I’m trying to surf my life a little better. To be honest, before LP was born, I was in a murky place in life. I was a grumpy woman. I found fault in too many details of my life. While I couldn’t put words to it then, I felt I wasn’t giving Mouse and Chipmunk the mother they needed. Looking back, I think I’d let life get just a little too precious in my head, started to think that I could bend life’s waves to my liking. And that was just… well, I’ve never seen anyone succeed at that.
When I say that learning my infant son has Down Syndrome has actually been a more positive than negative experience, I get a lot of silence. In the beginning, I remember going onto online forums and reading things like “I would never change a thing” and I thought it all sounded crazy as all get-out. Why the hell were these people saying this? Maybe they were just shining up an awful, unchangeable situation.
But here’s the thing… I’m pretty sure they’re right. I can’t change the waves; I can only ride them. And yes, the practice of surrendering oneself to life’s mysterious twists seems impossibly hard. We move through life trying to bear witness to a greater virtue and grace than perhaps we can actually fathom. And that movement, getting up on that board, wherever it leads, takes strength. I know in my heart that this wave was meant for me. I’ve seen more of life’s beauty than its harshness. I have met awe-inspiring people. I’ve understood a deeper sense of acceptance for all human beings.
But… I’m still tired.
Maybe I’m struggling too hard in my mind. Maybe I need to go back to my fishing/beach bum thinking… but that seemed a lot more passive than the medical ups and downs we are going through now. I guess I’m thinking that getting up on that board and riding your wave is less tiring and more exhilarating than getting caught in the undertow. It is hard to know which one I’m doing sometimes.
I took all three taters to the beach today. LP took a nap and seemed just fine with it all, waves or no waves.
When my little one with Ds was at his sickest, I felt the same way. I’ve always called it survival mode….when I swam just for the sake of swimming.
I wish your heart rest and health for LP.
I’m riding the waves with you. I’m soooo tired as well. One day great…one day bad. It’s a crazy ride, but I’m thankful to have friends to share it with. I’m glad you all got to go to the beach. LP looks much relaxed!
Well said sweet friend. Well. Said.
I know I have told you this before, but I will say it again anyway. You write so beautifully. I loved this comparison, this journey is all about riding the waves. Such a sweet picture of the little guy too :)
what a ride. and what a beautiful piece about it. glad you had some fun time at the beach with all three – and love that sweet LP resting in the beautiful sun we had today. xoxo
On Wed, Mar 13, 2013 at 5:53 PM, Kimchi Latkes
The things you write are so beautiful, Jisun. I am drawn back here again and again. You have much more wisdom than you might even realize. I really admire you.
We have an (almost) 4 month old diagnosed with DS at birth. It still feels exhausting, but looking at the road behind me, those first 3 months were so exhausting that there isn’t even a word to describe it. For those reading, it does get better. A lot better. I’m still processing all the public responses about our baby – “God blessed you”, “Sorry you had a baby with DS”, “They are little miracles”.
The comments I really liked are these: “Congratulations”, and “Call us if we can help”. The folks that said those things made me feel so much stronger.
Looking forward to reading more of your posts! Stop by and visit my blog … a “Daddy Blog” about raising a child with DS.
Congrats on your beautiful baby. Oh, enjoy the heck out of these days and know that there will be many, many more sweet days to come.
While we were waiting for my son’s diagnosis of Down syndrome, I had so many people tell me that if it turned out he had it, we would be so blessed. That was NOT what I wanted to hear. I wanted to hear, “Don’t worry, he’s fine.”
Truth is we are blessed, it is truly wonderful, our family is so much better now that our little guy is in it. At the same time, it’s still not okay with me. Hard to see how it all fits together, but it does. It’s not necessarily one way or the other, sometimes it’s both.
You are writing a book–hopefully!! Gorgeously written post. ADORE IT!!
Congratulations on your gorgeous baby! My child with Down syndrome is now 11, and she’s everything I ever wanted in a daughter: funny, smart, caring, sweet, and so sassy some days that I wish I could lock her in her room. But I remember the early days so well, and all I can say is, keep riding those waves. It does get better, and your life will be changed profoundly in unexpected ways.
Thank you! We are eight months now and I’m on a pretty good part of the wave. :)
I love this. Not sure how I missed it when you published. And yes, the medical times are hard stuff. Heart stuff was hard, but there have been a lot of other hard stuff as well. And it does make you tired.
Jisun–I tired boogie boarding in CA in college and sucked at it. When I get overwhelmed, all I’ve got is the Ohio River and no one in their right mind is surfing in that water. I hope LP’s possible conditions minimize to zero and he grows up with his strong momma and dad.
[…] Lee, who blogs at KimchiLatkes, approaches the realization that other parents shared when she first learned her son had Down syndrome. […]
I can’t really tell if this is a recent or old post. But I understand the surfing metaphor well. Theo was born with esophageal atresia, tracheal malaise, and complete AVSD. He was in the hospital for most of his first nine months. It was exhausting and everything else took a back seat – just making it to the hospital each morning was all I could manage. But the positive was that it cut through the bullshit instantly and rearranged priorities to what really mattered. Beyond that, you just get through it, I think. And that in itself is surfing.
You are a very wonderful writer and a strong mom. The job of a mom is never ending, those waves are mighty strong and scary. But you are one of many moms that can ride any wave that come there way. I truly admire you.
Many blessings my friend.
Thank you. ❤️