I woke up this morning to a Facebook post from a fellow Rockin’ Mom asking for urgent prayers. Her three-year-old son, Jude, had gone into cardiac arrest, and the doctors were trying to resuscitate him. Her post ended with “Please please please stay with us Jude.”
Her prayers weren’t answered. As our Rockin’ community waited with prayers and hopes and all thoughts on Jude and his family, he passed away. That makes three Rockin’ kids in less than two weeks. In the summer, when usually kids are relatively healthy. The winter is a terrible time for our community—so many kids get seriously ill, and some pass away. But summer is usually fairly calm. But not this ten days, I guess.
I clicked on the mama’s profile and looked at her profile picture, which had a beaming, healthy-looking Jude smiling out at me. What happened, I wondered. Why had a seemingly healthy child suddenly died? I don’t have a solid answer, but I have heard that he had a stomach virus that led to his cardiac arrest. If that’s true, I’m even more scared than I was before. Sam ended up in the hospital with his last stomach virus, and there were moments where I truly feared for his life. Apparently for good reason, if it is true that a simple stomach virus led to little Jude’s death.
I am so full of emotions right now that it’s hard for me to process my thoughts. My heart breaks…completely breaks…for Jude’s family, especially his mama. I’m filled with sorrow for another beautiful life lost. I’m filled with fear for my own beautiful son, healthy and happy and running around today…but what does tomorrow bring? And next week? And next month? Next year? Someday, will we be the family whose child suddenly, tragically dies?
I have struggled with depression in my life, but never anxiety. But lately, I’ve began to wonder. We Rockin’ Moms were recently joking that Zoloft (prescribed for anxiety, among other things) is “the official drug of the Rockin’ Moms” because so many of us are on it. Is it any mystery why? When you look at your child every single day and wonder if it could possibly be the last, even when that child seems perfectly healthy…well, it’s enough to make the calmest among us feel anxious. I feel anxiety about Sam, but it’s beginning to creep into other areas of my life, too. I’m a nervous rider in the car now, and I never was before. I wake up in the middle of the night panicky about things that never bothered me before. Every single time my kids are in a car that doesn’t include me, I wonder if they will be killed in a fiery wreck.
It’s ridiculous, and I don’t want to live this way. The logical side of me recognizes how unlikely this all is: Sam probably isn’t going to succumb to any sudden, mystery illness and die. My kids are rarely in the car without me, so it’s unlikely that they’ll die in a fiery crash without me. My husband is a good driver, so there’s no reason for me to be nervous riding in the car. It’s all ridiculous, ridiculous, ridiculous…and yet I have to fight to remain calm about it. I have to squash down all those instincts that tell me to panic and force myself to be calm.
I don’t want to join the ranks on Zoloft. Nothing at all against Zoloft, and I salute my fellow moms who took the positive step to take control of their anxiety! But I was on antidepressants for migraines, and they packed 50 pounds on me. The simple answer is that I don’t want to go on medication again because I don’t want to gain anymore weight! I suppose it’s vanity, pure and simple.
But hey universe, here’s an idea: How about you cut us Down syndrome moms some slack and stop taking our kids away? Because I will let you in on a secret that I don’t think many people understand: When one of us DS mamas bleeds, we all bleed. Not to the same extent as the mother, of course—Jude’s mama is hurting today a million times more than anyone else on this earth. But we are all hurting…for her and for Jude. It’s hard to describe the bond we have in the DS community. I know my husband doesn’t even quite understand it. But imagine it like this: To us, each and every child in the DS community is sort of like a distant relative. It’s not just like when you read about a kid in the news dying tragically and you feel passing sorrow or sympathy for a moment and then move on with your life. It’s more like when your cousin’s child passes away. You might not see your cousin often, and maybe you’ve never even met her child—but still, when the child dies, you feel a profound sense of loss that doesn’t go away quickly. It stays with you; instead of feeling momentary sympathy, you grieve for that child, even if you’ve never met them. It’s like a tiny piece of your family has been tragically lost.
To Jude’s family, my whole heart is with you today. Your little boy was beautiful. I am so very, very sorry that he won’t get the chance to grow up with you on earth. To Leo’s family, I am so very, very sorry that you only got to have Leo with you for nine short months before he passed away last week. I stared at his sweet, smiling face every day as you marched slowly toward removing him from life support, and I cried when I learned your wish for a miracle had not been granted. He was beautiful, too. I don’t know the details of the third child who was lost in the past ten days, but to his or her family, you have my heart as well.
To the universe, enough already. Three losses in less than two weeks is too much. Our community needs a break.
Note: If you are wondering what you can do to help these three devastated families, may I direct you to Down Syndrome Diagnosis Network’s Rockin’ Family Fund? Among other things, this fund is used to give a memorial gift to families who’ve lost their child with Down syndrome. The gifts are a lovely tribute that hopefully will bring the family a small measure of comfort in the most devastating time of their lives.