April 10th is National Siblings Day, and what better day than today to recognize Hope for HIE’s Super Sibs? What’s a Super Sib, you may ask? A sibling of a brother or sister with HIE across any outcome or impact.
Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth with a lot, and go without a lot, all while working through their own feelings of being a sibling to a child with disabilities, or to a child who has died from HIE.
So today, let’s hear from the parents, caregivers, and extended family members of our Super Sibs as they reflect on the immeasurable role they play in their family.
Nathan & Lucas
“These big brothers are so great at accepting, loving, and including Cameron, no matter what. Sometimes, they’re better at it than we are! They are also so good at being flexible with whatever kinks might be thrown into our plans depending on what Cameron has going on. Cameron is so lucky to have such awesome big brothers.”
Maisie
“Maisie is such a rockstar! Little brother, Jace, was hospitalized for the first 10 months of his life. She had to adapt so much during this timeframe. Yet, Maisie never failed to FaceTime her little brother and tell him, “I’m so proud of you,” and find ways to play with him virtually since she’s too young to see him in person or spend time hanging out in the hospital courtyard or library. Since he’s been home, she’s quickly gone into full big sis mode, helping in her way with all the medical stuff, playing with him, reading to him, and comforting him when he’s upset. She’s been through so much this year and has taken it on like a Super Sib!”
Malcolm
“We are so proud of Malcolm. He is a fantastic little brother to Grayson. He is so resilient, patient, and caring. Being G’s brother isn’t always easy, and he takes it in stride. He doesn’t hold the extra attention that Grayson needs from us against him. But he doesn’t cut his brother any slack, either. He doesn’t see Grayson as a kid with a disability; he simply sees his brother. He treats Grayson as a brother should, sometimes as a best friend, other times as a rival but always with love and acceptance.”
Estevan and Jazlyn
“They have been so strong since day one, and they help mom with whatever she needs around the house and with baby girl.”
Lorelei & Allie
“Lorelei and Allie bring out the very best in Nora- the biggest smiles, the loudest “laughs”, the most curiosity and alertness. They are fully aware that Nora was born with what they describe as “a brain that works differently”, and they proudly and excitedly share her history and achievements. They are a great team, with one who prefers consistency and is excellent at suctioning and the other who is the jack of all trades, able to change the milk bag, the diaper, or the clothes (she’d change the trach if I’d let her!) I want to celebrate their resilience, their flexibility, their compassion, their selflessness, and their perseverance. Life changed suddenly, in a big way 3 years ago, and 2 littles had to start making sense of words, thoughts, feelings, and changes that are really big. Super Sibs from Day 1, I continue to be in awe of them…”
Bella
“Bella is so loving and caring, just the best big sister! She can always put a smile on Leila’s face.”
Jeovany & Jaelynn
“These siblings are always wanting to cuddle with their sister. They understand the hard days she has and are always willing to help their mom get things for her. They always want to include her in their travel sports even though it’s a lot to pack. They’re always willing to watch her while mom needs a second. They show interest in learning new diagnoses and procedures. They take on a lot of responsibilities by choice and never complain. They are always finding a new toy sister likes or special songs she smiles to, and they make sure everyone around her knows what she likes. As a single mom, I couldn’t be more proud of how compassionate they are with their sister and her medical needs.”
Kyla
“She’s an extraordinary sibling, showering my daughter Kamani, who has HIE, with unwavering love and support. Their bond is beyond what I ever imagined, filled with tender moments where she holds Kamani close, comforting her with soothing words.”
Did you know we have a program just for siblings of children with HIE?
They receive a welcome kit upon signing up, plus quarterly kits for the remainder of that year. These kits are specially crafted to celebrate and nurture the incredible siblings of our warriors: from engaging, developmentally appropriate activities to access to Hope for HIE’s Child Life Specialist, we’ve curated a toolkit that not only acknowledges the vital role these siblings play but also provides a space for them to thrive.
Sign up by clicking the link below and selecting the “Super Sib Kit” option to find the appropriate kit and age group.
Please note you MUST be a parent or guardian of a child with HIE and their sibling[s] to sign up for this program.
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