Eyes to See

In many families living with the day-in and day-out challenges associated with caring for a child with disability or complex medical challenges, oftentimes each member of the family experiences a sense of grief, loss, confusion, and loneliness. I’d even go so far to say that for many people in a family like this, the experience can often be traumatic as well as formative.

I’d like to zoom in on one particular member of these families: the sibling of a child with disability or complex medical challenges. From here on, I will refer to them as “siblings.”

While parents and caretakers of special-needs individuals often scramble to keep schedules, plan rides, orchestrate and implement treatment plans, it goes without saying that life can be extra chaotic and stressful. In the fray, siblings can often go unnoticed. These incredibly strong individuals, typically from an early age, learn a sense of self-reliance and resilience as they regularly see their sibling with special needs taking center stage in the home. Let me share with you a few thoughts and considerations regarding “siblings.”

First, in terms of strengths, siblings learn to adapt quickly, to respond quickly (i.e. in case of a medical emergency), and care deeply. Perhaps these strengths are learned through stress, or possibly traumatic medical emergencies that their siblings have experienced. These siblings are perceptive and can read the looks on their parents/guardian’s faces well. They can gauge the emotional temperature of a room or social setting better than most. They typically understand all too well what “fight or flight” feels like. When a crisis or emergency occurs (typically at higher rates in families with special-needs individuals), their heart beats faster, their breathing rate increases, digestion slows down, pupils constrict and focus…. They are activated…often…

Which leads me to my second point, which I would consider to be a noble, yet a frequently maladaptive barrier: in their state of borderline “chronic activation,” these siblings are often masters of the mask, and learn that their needs may not have the space to elbow through to take center stage. It is a learned strategy, to nobody’s fault. This can manifest in a couple of different ways, below I will name 2:

1.)   The sibling learns a sense of self-reliance that appears incredibly adaptive and helpful. With their deep empathy and consideration of others’ needs above their own, you might see a little boy or girl take on roles in a family that strikingly resemble some of those of a parent or caregiver. Whether intentionally or unintentionally, in families like these, self-reliance is rewarded and reinforced… for better or for worse.

2.)   The sibling can also find themselves stepping into a world of bitterness, resentment, helplessness, and hurt. They may always wonder why mom or dad couldn’t seem to make appropriate space for their needs.

It’s possible that both of the above scenarios will come into play at some point in the sibling’s life. Regardless, I just want to highlight the strength, fortitude and resolution of these individuals. They usually have special sets of eyes through which many of us will never have the chance, nor the privilege, to look through. These individuals have eyes to see. They are discerning and wise… they are also lonely… though they are pretty darn good at not letting on to that piece. These little eyes see an even more unpredictable and scary world than many of us can imagine.

I know these words do not do the experience full justice. I simply desire to highlight these individuals and remind the rest of us that so much occurs behind the scenes… behind the eyes, of these siblings to children with special needs. Can we grow in our ability to see them too?

For further reflection:

1.)   Are you a sibling (or child) of an individual with complex medical challenges or special needs? What emotions come to mind as you read and relate to the above experience?

2.)   In what ways can our world benefit from having people with “eyes to see” like those described above?

3.)   What kind of eyes do you have? What do you feel like you have been given the privilege to “see” that many others may not have?

4.)   Who comes to mind for you? What are some action steps for you moving forward.