Lately I’ve had a new image pop into my mind when I picture my grief. Most of the time, it’s like I’m on a pontoon boat in a calm bay. There are other people with me on the pontoon and we are happy. The sun is shining, we are laughing, eating, drinking, looking ahead of the boat with joy. Underneath, the water is deep and dark. I know it’s there and that I might fall into it at any moment. But instead, I enjoy the sun on my face, content to know that the water will most likely stay safely under us.
Some days, I sit on the back of the pontoon and dip my feet into the water, just for a little while. I’m still calm because I know I’m safe, but touching the water for a little while feels good to me. Some days I might even jump off the pontoon for a short swim in the water. Those days I go deeper, maybe even submerge my head, but I still know the pontoon is close and that I can climb back out easily.
And then sometimes, I can see a storm on the horizon. It moves in slowly and the sky becomes dark. The waves kick up and the boat starts to rock. Quickly, I can feel that I might fall off the boat and eventually I do. I’m in the water and the waves are crashing over my head. It’s dark and I can’t see the boat, or any of my people on it. I feel I’m drowning. I’m afraid. It’s so dark and it’s hard to breathe. There are times when I feel I might not survive the storm. But I know if I concentrate on treading water and keeping my head up, that it will eventually end. And slowly, slowly, it always does.
Yesterday was World Down syndrome day, 3/21, because with Down syndrome there is a third copy of the 21st chromosome, thus the more technical label of Trisomy 21. When I think of Beau, I almost never think of the fact that he had an extra chromosome. But every year on March 21st, I’m reminded. March 21st of 2014, when I was only 9 weeks pregnant, was the day I first had an overwhelming intuition that he was going to be born with Trisomy 21. I don’t know why. But I read an article someone posted that day and I just knew. I swiped past it after I finished reading it and told myself that was a ridiculous conclusion, but I was correct. And then 20 weeks later he died and we don’t know why, nor will we ever know why exactly. Was it a result of the extra chromosome? Possibly. Possibly not. Other factors that could have happened to any baby, extra chromosome or not, may have been the cause. And I know now that it doesn’t matter either way anyway.
Down syndrome is such a huge part of our life. And yet, it’s not. When I was reading so many beautiful articles yesterday I almost shared several. But I couldn’t choose just one. What they all had in common is love. So much love was present in everything I read that contained the words “Down syndrome”. I became overwhelmed with love too; incredible love for our child. Then my heart broke again for his loss and all that we lost with him. How I long for him to be here as he was meant to be. Settled in our family and teaching us daily what love really means.
I was a little taken aback last night when I felt a storm moving in on my sunny pontoon excursion. Lately I’ve been floating along, feeling good, and then just like that the clouds were building. I know this is a result of March 21st and the longing that ensues from seeing so many beautiful posts and articles about people living with Down syndrome. And I know that March 21st is always the start of my grief cycle. The start of my stormy season. From here I’ll move into April, when we received his test results. Then onto May with Mother’s Day and my birthday, both difficult days for me. June is usually relatively calm, full of some good memories that I had when I was pregnant with Beau. July is always super stormy with the days we lost and delivered Beau. Onto August when I think about how I should have still been pregnant. Same with September and then finally to October, a big month that includes Down syndrome awareness month, Infertility/baby loss awareness month, and Beau’s due date of October 16th. From November through February, I’ve historically been buoyant as storm season ends.
This is my third storm season and I know I’ll be a bit stronger this time, as I am each year when storm season comes around. In my mind, I see myself getting better and better at treading water in turbulent waves. I’m hoping for more easy cruising days than not. A lot of people know that in reality I’m a terrible swimmer, making all of this a little harder to visualize. But I’m looking forward to some sunny days this summer and hoping for less rain. I know what is on the horizon, but I also know I’ll make it through.