Sometimes sadness feels distant, like Third World suffering. And then there are the times when it hits close to home.
Noted writer and special needs advocate Vicki Forman unexpectedly lost her son Evan this week. The subsequent torrent of sorrow and shock that have been moving through the online community of special needs parents and advocates speaks to the immediacy of Vicki's writing and the positive effect that she and her son have had on others who are trying to make their way in a world of silent monsters.
It also speaks to the quiet fear that so many of us carry through our lives. After I left a heartfelt but probably inadequate message on Special Needs Mama expressing my condolences, Vicki was kind enough to write to me. In her message, she mentioned the thing that we both knew already, the thing that all parents of special needs children know but rarely speak of, even amongst ourselves. It exists behind the inspirational stories and the moments that allow everyone to believe that strong people who fight the good fight will always triumph in the end. She referred to it as "a vulnerability that is unmentionable," and in Evan's case, it became more than he could bear.
It lurks, the biggest monster of them all. It watches and it waits, and sometimes it takes advantage of that moment of vulnerability. What it leaves behind in the short term is chaos. It leaves fear and a cold truth for those of us who live our lives, even on the best of days, casting brief but troubled looks over our shoulders. And for parents like Vicki, it leaves a pain that I can't even begin to imagine, although of course I've imagined it plenty over the last five years.
The thing is, however, it doesn't end there. People who have known me for years can attest that I am not the same person I was before Schuyler came into my life. Most parents are changed by their kids, but I'll go out on a limb just a bit and say that the parents of broken children are changed even more profoundly than most. Evan was just about Schuyler's age, and the years that Vicki and her family had with him have undoubtedly left them all different people than when they began this trip together. In Vicki's case, her writing and her advocacy over the years have allowed Evan to change a lot of people as well. I hope that when the pain has dulled a little bit, she'll see just how much he left behind, and what a legacy she has allowed for him.
As cliched as it may sound, that's how kids like Evan never die. Small comfort today, but true nonetheless.
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Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752
Rob, this is lovey. Geez, that sounds so trite...but I'm kind of out of words at this point. I know that all of the comments and the outpouring of support, grief, love, all means a lot to Vicki, Cliff, and Josie.
ReplyDeleteYou are so right about the ways our children change us. I *know* I'm not the same woman I was nearly 5 yrs ago before Nik was born. Sometimes I miss parts of the life I had but not the woman I was.
I was watching a TLC special last night about a girl named Kenadie in Canada who suffers from primordial dwarfism. In addition to her incredibly small stature, at the time the special was filmed she was three years old and barely speaking. My thoughts of course immediately turned to Schuyler.
ReplyDeleteThe special also featured a pair of siblings with the same type of dwarfism. At 24, one of them lost his life to an aneurysm (common for those with the disorder). After facing his challenges for so long, his life was over in an instant.
The knowledge that just living with the monster every day isn't always the biggest danger must be overwhelming at times.
I watched my church congregation this weeken deal with the vulnerability you described. For many years, Randy Pausch the Last Lecture professor, attended our church. Many of my closest friends had a personal relationship with him. I was in church the day he announced his illness, and I followed his blog entries for months.
ReplyDeleteI think our vulnerability was the need to hope he wouldn't pass away. Randy was more certain of his fate than we were. We aren't a church that professes to believe in modern day miracles, but I could tell by the look in everyone's eyes that we wanted a miracle just the same.
What makes being vulnerable so difficult is knowing that what I love is fragile. I ache because I want to change things. For Randy's family and for Evan's and for my own sometimes.
Thanks for being eloquent when it's the most difficult to find words. I think it helps.
Melody Platz
I think one of the things that makes your blog so popoular is how universal it is. Many of the experiences you describe as a parent of a special needs child are actually identical to those of parents of neurotypical children - although yours probably to a greater degree. Even this fear of which you write - all parents have experienced it, most not every day like you, but still we can relate. The blogger Catherine Newman put it best when she once wrote that to have a child is to forever-after exist with your heart walking around outside your body.
ReplyDeleteHi, I've been a reader of your blog for a while. Just thought I'd play devils advocate on this one. I was once one of those 'broken children- now i suppose a 'broken adult- to whom you refer. Whilst i have no doubt that being the parent of a child w/ special needs is more than tireless, stressful etc and that when you wrote this you were having a reflective, grey day ( we all have a right to them) I wonder if you thought about the negative connations of seeing your daughter and indeed others as 'broken'?
ReplyDeleteIt is an inescapable fact that our lives are more dependent than others but to me the phrase conjures up imagery of being a disappointment or somehow less of a person that we otherwise might have been without a disability.
Again, your have a right to your grey days or moments i just hope you also realise the lasting impact of such a mindset - especially that of a parent- can have on a childs self- image
If you see her as broken, she will come to see herself that way and I'm certain you want a more positive legacy left with her than that.
If you've been a reader of my blog for a while, then you'll know that I've talked at length about the terminology I use many times. If you do a search through my archives, you'll no doubt be able to find a discussion of this topic.
ReplyDeleteShort version: I believe that "inclusive" language has its place, but I think it can and often is used to sugarcoat disability and is typically more for the able-bodied who want to make piece with their loved one's disability, which is understandable but doesn't help that person one bit, in my opinion. Interestingly, "broken" is a self-referential term that I picked up from adults with disabilities. They (and I) see it as an unblinking way to refer to their condition, rather than pretending that everything's okay, which to me is one of the worst (and ultimately most destructive) aspects of some disability thinking.
A thing that is broken is not a thing that is defective. A thing that is broken is a thing that can be repaired.
Anyway, there you go. Different opinions, which is fine.
Broken is a sentiment I can relate to whole heartedly. There should be less sugar coating in this world--I agree.
ReplyDeleteI have mixed feelings on the term. It is an excellent way to describe the physical condition, but I sometimes feel as though it might have false implications. When we use the term for animals and healthy adults, it refers to their will or spirit being broken. That wouldn't be an accurate description of Schuyler at all! But, I respect that you are being honest about her and to her. I don't worry about it hurting her feelings one day.
ReplyDelete