My Unsung Heroes

March 31, 2021 | ,

I posted this meme the other day and captioned it with, “Siblings of special needs children are unsung heroes. I’m always in awe of my four who love and care for our sweet Cece in ways that are truly well beyond their years.”

It made me think that as parents of a child with special needs, sometimes we get all the credit. People will even throw words around like strength and courage, and say things like, “I don’t know how you do it,” and it’s meant to be a compliment.

But it dawned on me that more often than not, it’s the siblings of a child with special needs that get overlooked, unrecognized, and unnoticed because everyone is so focused on the special needs child. And that’s where I want to spotlight my other four incredible children.

As a mom, one of the toughest things to deal with when it comes to having a child with special needs is feeling like you’re neglecting the needs of the others. And I’m not talking about helping one with his homework, while the other one wants to play games with you. I’m talking about driving off in an ambulance with your 4 month old because she’s had another seizure, husband following in the car behind you, and waving to your 13 year old that you’ve left in charge of the others until your sister, mom, relative, or friend can stay with them. That’s the kind of neglect that stays a little longer with you and that’s the kind of stuff my kids have had to experience at such a young age.

When Cece started having seizures at just 4 months old, that means that my other kids were only 13, 11, 8, and 4 respectively. And over the last four years, they’ve lived through 911 calls, ambulance rides, emergency room visits, leaving places because their little sister was having a seizure, or being left at friend’s and family’s houses because mom and dad had to stay overnight in the hospital for several days. They’ve had to give up things like seeing neighborhood lights at Christmastime, not attending dance recitals as a family, or even going to the movies as a family for fear that the lights, noise, or commotion will trigger a seizure for her. My girls used to yell from the other room, “Mom, I think Cece is having another seizure because she looks like she is staring off again.” My boys used to cry themselves to sleep at night even when staying at my sister’s house because they missed mom. They’ve been through A LOT. And years from now, I will never truly know how all these events have impacted them, but I can say for certain that these events have definitely made them into the most amazing humans I know.

Bella, our oldest, is probably Cece’s favorite playmate. Bella started this game with her about a year ago where she would crawl around and chase Cece. It is literally her favorite game and she squeals in delight when she hears Bella say, “I’m going to get you!” because she knows it’s time to play! No one can make Cece laugh like Bella. As mom, I tend to treat Cece a little more fragile than I probably should, and watching Bella play with her fills me with so much joy because she doesn’t see her disability at all; just her 4-year old sister that she loves to be silly with. Bella is also the only one that Cece will calmly sit and watch TV with or pay attention long enough for a book to be read to her. I think Cece senses they are kindred spirits which is why I will often see them just “chilling” on the couch together. As my oldest, Bella has had to be left in charge of her siblings whenever we rushed off to the hospital; such a big burden to carry, but she steps up each and every time. One time I called to check in, asking how they all were doing, and one of my kids said that Bella had gathered them all upstairs so they could pray for Cece together. She is also our personal baker and makes cakes and treats for each of her siblings on their birthdays which is probably one of the best big sister things she does that I love so much. She has a fun and carefree personality, but it’s her sensitive and thoughtful side that people don’t often get to see, always coming to her sibling’s defense when they need her the most.

Our Claire Bear is definitely Mama Bear to Cece. Claire’s superpower is her sensitive heart, which means she can sense the needs of others. When I wake up in the morning, she is the first to greet me and asks how I slept, and at the end of the day, she’s the one that asks how my day went. And though it makes my heart break a little because I never want her to feel overwhelmed, she never fails to ask if there is something she can do before she plays the piano, reads, takes a nap...fill in the blank. I know she sees the magnitude of what it means to have a family member with special needs and so she always does her part without fail. As Mama Bear, she does it all - changes Cece’s diapers, feeds her, gets her dressed, fixes her hair, and lately, walks around the house with Cece as she’s learning to be more independent. Claire is the one that all my kids go to share their stories with because she gives them the affirmation that they need. It’s like she speaks each of their love languages. What makes Claire special is she makes each person in our family feel seen, heard, and loved.

Blaise is Cece’s first big brother and ever her protector. They say there is something about “sister love”, but I can tell you that “brother/sister” love is equally amazing. From the time that Cece was in my womb, Blaise just adored her. He is so gentle and tender with her, and he’s the first to comfort her when she is upset. “It’s okay, Cece. Big brother is here,” is what he says to her as he hugs her. When we go in the car, something that Cece is not a big fan of right now, Blaise will hold her hand and is the one that literally wipes away her tears. Not too long ago, friends of ours visited this place in New Mexico that was known for the miracles that had taken place there. So, they brought us back a container of soil from Chimayo which is believed to have sacred healing powers within its soil. You will often find Blaise in the evening, opening up that container of soil so he can bless his sister with it. He takes a small amount onto his fingers, traces a cross on her forehead, and says, “In the name of Jesus, be healed.” I have no doubt it will be his prayers, interceding for his sister, that will bring about God’s healing touch. Blaise may be small in stature, but he has the biggest heart in any room that he walks into. 

Finally, there’s our Gabe who always marches to the beat of his own drum. If I let him, he’d probably be dressed up in full costume everywhere he went. But secretly, I kind of enjoy sitting down to breakfast with a shark, Captain America, Grogu, Bumblebee….you get the picture. It’s hard to remember that Gabe is also Cece’s big brother because he’s still my baby, but he very much relishes the role. In fact, he embodies a little bit of each of his siblings with Cece. He loves to hug and kiss her like Blaise does, always volunteers to change her diaper or help get her dressed like Claire does, and 100% loves to play with Cece like Bella does. But when it comes to entertaining Cece, nobody does it like Gabe does! He loves to make her laugh and sometimes even annoy her a little….so much so that for a time, anytime he’d come around her, Cece would say, “No.” While he may be your typical 7 year old, the way he loves his baby sister is anything but typical. As he’s getting older, he’s learning more about her epilepsy, what upsets her, what might trigger an episode, and it always stops me in my tracks when he tells someone to turn down the tv because it’s too loud for Cece or that we shouldn’t watch something because of the flashing lights.

These are just a few examples that make me so proud of each of them. It’s a lot to deal with, yet they show me every single day about sacrificial, selfless love, that disabilities are only in the eye of the beholder, and that I have been blessed beyond measure to be mom to these amazing children.

Side note: I know that many people look at our situation and think, “How do you do it?”, and I just think, “We’re the lucky ones.” It’s not often that we can love the way Cece needs us to love, and as a family, we all recognize that she makes us better for it. My 11 year old son told me recently, “Mom, I’m happy we have Cece. She teaches us to be kind.” And really, what more can I ask for?

hifriend@tulipsandgrace.com
with love from Gilbert, Arizona
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