A 5-minute read about a personal perspective of a mother raising both well and medically-complex young children. You will learn about the impact a medically-complex sibling can have on the family dynamic and resources that may support the well child in exploring their emotions.

“Only if we have a super baby.” -- This was my daughter’s response when I asked her if she would like another sibling. Puzzled, I asked, “What is a super baby?” She explained that a super baby is one that can learn to sit, crawl, talk, maybe even walk — all the things her 2.5 year old little brother cannot, and likely will not, do. He is her version of a ‘normal baby’ brother. A brother who sits at family meals, but is fed through a tube. He gets to have an iPad, to help him communicate. A stander to help him stand. A gait trainer to help him walk. Extra appointments and caregivers, just for him. She knows he is different; he is not a super baby. Our family speaks candidly about his diagnoses. While in many ways her brother is super (super smiley, super easy going, super rare…), I appreciate her innocent honesty: having a brother like this does not always feel super, or fair. 

In her short life, she has seen her parents go through states of stress and overwhelm, as her little brother was born into a pandemic and then diagnosed with a life-limiting neurological condition. Despite our best attempts at maintaining a sense of stability, she has astutely observed (and likely internalized) aspects of our anxieties. She sees us drawing up syringes full of medicine and water, day after day. Recently she has taken to asking for her water in a 60cc syringe as well, which she gleefully squeezes into her mouth instead of using a sippy cup. While for my husband and me, the medical and adaptive devices are new and contextualized, for her they are cornerstones to her growing world concept and childhood imagination. 

When playing with blocks, she shows me two entrances to her miniature castle: both stairs and a ramp. “Look Mom, I made it adaptive!” Wonderful. What an empathetic and expanded understanding of disability and equity. I savor these moments, but I know the ways in which having a sibling with medical complexity and disability have impacted her are not all good.  The research regarding chronic disease on the well sibling shows that there are both positive and negative effects, in the short term as well as into adulthood. While empathy and compassion in siblings is measurably heightened, so is anxiety (2). Researchers have found a significant increase in utilization of the healthcare system across the lifespan for siblings of children with disabilities when compared to peers without disability in their household. Siblings often feel a caregiver burden, both as children and if they become adult caregivers of an adult sibling (3).

It seems like a mixed outcome can be expected from the sibling experience. So, as a parent, I am simply trying to find ways to embrace the positive, and confront the negative with honest integrity and as many communication tools and resources as possible. 

Sue Levine, a social worker who runs support groups for siblings, notes that “Kids feel a variety of feelings towards their siblings, and the primary feeling is not always love. Is it love some of the time? Yes, absolutely; but it’s also anger, frustration, embarrassment, all kinds of complicated feelings… maybe even hate,” (1). These complexities of emotions are inherent to human life; but perhaps more acute when growing up in a household with medical complexities or disability. It is important that siblings have a safe space to share these emotions, perhaps with a child life specialist through a pediatric palliative care group, in support group or individual therapy, and in open discussion with friends and family. By allowing these complex feelings to be shared, they are acknowledged and validated, and the child can release any secondary guilt for having harbored the emotions (side note: parents deserve this emotional validation and release as well!).

 Our daughter is still quite young. When she meets with the child life specialist, she often works on little art projects or plays pretend doctor games, allowing for her to weave a story, both imagined and real, through her play. Often she will share the completed artwork with me. In talking about the art with me, I can glimpse something I might not have seen otherwise about her perspective and mental state. Support groups and individualized therapy will be more appropriate for her at a later age. 

Beyond the complex feelings, it’s important to address the facts. It is imperative for children to know that disability is not contagious and that they did not cause their sibling’s medical issues. Children’s mental construct of disability and illness are relatively uninformed; they may make small assumptions that make it more scary than it needs to be. Presenting too many facts would be overwhelming; but being open and curious about what questions they have is a wonderful approach. Follow their lead, and you will be able to clarify a concern and quell a fear. I intentionally carve out time every day, five minutes or a couple hours, to be one-on-one and emotionally present with each of the children. We often just play, read, snuggle, or debate screen time. Upon reflection, this focused time might be just as important for me as it is for them. 

It is also valuable to think about how to help our healthy children through moments of medical crisis. When things feel particularly out of control, I try to give my daughter both support and direction. When I voiced my anxiety about the trauma that might form by watching her brother have a grand mal seizure, our palliative care physician suggested, “When he has a seizure, calmly as possible say to your daughter, ‘Your brother might enjoy having a stuffed animal with him when this seizure ends, could you find him one he might like?’” It gives her a measurable task to focus on and succeed in, plus a stuffed animal to hold. 

There is no way to protect my daughter from anxiety and medical emergencies. There is no way to control all that I wish I could. And so, I am moving forward by modeling the behavior of controlling what I can and finding ways to cope with what I cannot. On my worst days, I like to remind myself that even if I parent perfectly, my children will still find something to complain about! Raising rare children is emotional and exhausting. In my daughter's words, “it feels unfair!” But I get out of bed each morning, put one foot in front of the other, and begin another day as a Super Mom. You can too.

Resources: 

• https://siblingleadership.org

• https://siblingsupport.org

References: 

1. Bartolotta, Theresa (3/18/2022). Safe Harbor: A Podcast for Parents of Children with Special Needs [Audio Podcast] Episode 5 An important Conversation about Siblings of Children with Disabilities with Sue Levine. 

2. Dinleyici M, Dağlı FŞ. Evaluation of quality of life of healthy siblings of children with chronic disease. Turk Pediatri Ars. 2018 Dec 1;53(4):205-213. doi: 10.5152/TurkPediatriArs.2018.6778. PMID: 30872922; PMCID: PMC6408193.

3. Roper, S. O., Allred, D. W., Mandleco, B., Freeborn, D., & Dyches, T. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Families, Systems, & Health, 32(2), 241