Familiar Surprise

Yesterday was a tough day for Sibs across the country, as we learned the news of the shooting at the Inland Regional Center (IRC).  Details are still unfolding, but what we know at this time is that the shooting appears to be related to a disagreement in a rented-out conference room, and not related to the core business of serving youths and adults with developmental disabilities. Nevertheless, hundreds of siblings and caregivers were on campus, and for hours the circumstances were unclear. For those hours, families throughout the area held their collective breath, waiting to hear how their loved ones – many without a full set of coping skills – fared through the chaos.

I was lucky enough to not have that variety of panic, as my sibling was not at the IRC. But the set of emotions that it did trigger are familiar, I’m sure, to many of you. Fear – for the times I thought someone wished my brother harm, for the times I didn’t think he could defend himself, for the times when a break in his routine threatened to turn into a disastrous meltdown. Indignation – that the world doesn’t want to help my brother the way I strive to do, that siblings are gathered in centers instead of finding their place in an integrated world, that no one in the media knows what a regional center does and can at best copy from their website. Frustration – that I have all of the worry and none of the power, that information flows more slowly and confusedly with and about our siblings, that this will probably (ironically) result in the best fundraiser that IRC has ever had.

But most of all, I’ve spent the day thinking about losing my brother. It’s been 13 years now since he passed, half as long as we had with him. His loss was best described with borrowed words – a familiar surprise. Jonathan’s disabilities stemmed from childhood cancer (a brain tumor). While the cancer never came back, our childhood was marked by the emergence of many new conditions that were tragic side effects of the life-saving cancer treatments available in the 1970s. Stunted growth, hearing loss, hair loss, epilepsy, cognitive and learning delays. When he had a stroke in his mid 20s, it was certainly a jolt, but we just geared up to face it like the prior challenges. Jonathan made improvements during his six months in a rehab center – relearning to grasp and walk and talk. Still of course with challenges – never holding small items or anything over a pound, never walking without a walker or for more than a few minutes, and talking at a whisper on the exhales from his tracheotomy tube. A little less than two years after his stroke – just about the time we had really settled into a new normal – my brother collapsed and stopped breathing. At the time I lived on the other end of the state, but had planned to be in the area the next day related to a business trip. After Jonathan’s collapse and rush to the ER, my mother called with those dreaded words of “get home now” and “we’re not sure he’ll still be here when you get here”.  The rush to the airport, the short flight, the drive to the hospital – it was the longest few hours of my life.  I cried during most of the flight, and my kind seat-mate offered me comforting words about the safety of air travel. I couldn’t find the words to say that I, a young woman, was despairing about saying good-bye to my also-young brother. How many times have I been in the position that it’s just too much to explain to someone from the outside, or that the emotions are too raw to share with a stranger…

I did get the chance to say good-bye, although it was to his body and not to his mind, as he never regained consciousness. In the days and weeks and years to follow, I’ve had nothing but time to reflect on how prepared or not prepared I was for his passing. The constant health threats throughout our childhood, the participation in support groups for terminally ill children, being around hospitals and death and grief… I knew what death at an early age looked like. I had even dared to imagine what it would be like to have a “normal” family that didn’t center around caring for my sibling. But to experience it was an entirely different thing. My long-term choices in career and home no longer needed to consider future caregiving responsibilities, my life partner didn’t need to be someone that would welcome my sibling-child into our life. More immediately, my parents had an abundance of child-focused energy that became intensely focused on me, and everything from visits home, to phone calls, to family travel looked different than anything I had known. My very identity was changed from that day forward. Not better, not worse, I just became a different person.

To all the Sibs that spent December 2nd worried about their siblings under lockdown at the IRC, my heart goes out to you. The shock of a mass shooting so close to your loved one, but also the dread and protectiveness and righteous indignation that have worn grooves across your heart.  I wish that none of us knew this familiar surprise.

Please share your story in the comments. As a community we are here to support each other, to deal with the realities of Sib Life, and to have the courage to imagine the possibilities together.

–Kalyn

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Kalyn Farris is a new addition to the Board of the California Sibling Leadership Network. Her sibling, Jonathan, passed in 2002, after surviving for 24 years with IDD and physical disabilities following childhood cancer. She currently lives in the Bay Area, and works in program management at a large health plan. Kalyn is particularly interested in supporting the growth of the CASLN, and bringing additional attention to the policy issues concerning Sibs and their siblings.

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