Fail
Sometimes it’s the things that you never see coming that do you in. And those are hard to bear.
Worse, however, are the ones you SHOULD have seen coming, but didn’t. Because you were careless, or complacent, or stupid. Because you failed to do your job, the one job that truly matters.
My daughter had a choking incident yesterday, one that we’d been warned was possible ever since she was diagnosed nine years ago. She had a choking incident, a bad one, bad enough to leave her crying for a long time after and nervous for the rest of the day. And she had it because she tried to eat something that was forbidden, something that has always been forbidden for her to eat because of the choking hazard it represents, something identified as dangerous since she was first diagnosed with polymicrogyria.
Something that I gave her.
There are so many things that we watch for in protecting Schuyler. We try so hard to help build a successful school experience for her. We plan for the future, make plans to move somewhere with a good public transportation system so that one day she can live independently. We watch for seizures, wait for them to turn ugly. We try to teach her to be a good person, which for Schuyler is the easiest thing in the world since she does actually possess the biggest heart of any human being I have ever known. And we protect her from the things that can hurt her, including the foods that her condition makes it very difficult for her to eat without choking.
But the things that make us the most vigilant are the ones that are ever-present, and for Schuyler, choking is one that doesn’t come up very often. Part of that, hopefully, may be a lessening of the choking hazard as she grows older and continues to develop. But her success probably has more to do with the fact that she self-regulates and stays away from the things she can’t have.
As she gets older, however, Schuyler grows less patient with her disability, and is more determined than ever to be just like everyone else. That now includes eating things that she’s not supposed to have. So I would love to say that she snuck something behind my back. God knows that probably happens a lot, although after yesterday, perhaps not so often anymore.
But no. She asked me if she could have this food item, and I said sure, because it had been forever since she’d choked, and it seemed harmless enough, and I was complacent in the face of her monster. And her monster made her pay for my bad judgment.
I sometimes feel like a failure as a writer, and as a public speaker and advocate, and God knows I’ve had my personal failings as well. But nothing feels quite like failing my daughter, failing to keep her safe, giving her the very thing that could have taken her from me. I’d give just about everything I have to make this the last time I fail her like this.
I’m not sure why I’m writing this here tonight. This space is supposed to be about sharing something useful with you, something you can take with you and improve your own lives. Instead you get me, trying to exorcise my own monster, the monster of failure. It’s a big one, this monster, and its teeth and claws sink deep. And if you’ve ever felt that monster’s bite, then I guess maybe you understand how I feel, and we can just sit here and murmur sympathetically to each other, and then go about our day a little wiser, and a little more aware of the dangers.
Mostly, I just wanted to tell Schuyler that I’m sorry, terribly sorry for letting her down.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
Sounds scary, but seriously give yourself a break. I have made many terrible parenting mistakes. We all do, but it does not mean that you or I are bad parents. We are just imperfect.
Robert, if I had to write a column like this every time I made a serious mistake with my three special needs children, I’d be knee deep in articles. My main thought to share with you, is grieve over your imperfection, learn from your mistake, then FORGIVE yourself just as you would forgive Schuyler. Being angry with yourself for a good reason can be therapeutic. Carrying that anger or letting it ride on your back for too long is a heavy weight that will not improve your parenting; rather it will make you less effective. I get up every day to parent my son who has asthma, ADHD, multiple allergies, a severe bleeding disorder as well as a connective tissue disorder, chronic fatigue syndrome, plus the emotional and educational issues that result from all of them. And I know that I’m not smart enough, disciplined enough, strong enough. But I also know that NO one else but ME will KEEP fighting EVERY DAY for my son. And for HIS sake, I must forgive myself, forget yesterday and go on. Because the sadness will paralyze me if I don’t, and if I quit, so will my son. Sending you hugs and prayers.
Oh man. This is so tough, this thing calls complacency. It happens to the best of us, though. You are obviously a wonderful dad, but sometimes, I think, fighting your kids’ monsters means waiting for the boogieman to strike — you know, the one everyone talks about but rarely actually appears?
It happens with us and our kids, sometimes. Sometimes it is complacency, and sometimes it is just life when you have a kid with extra issues. It is easy for me to write and tell you to forgive yourself … but I know from experience it just doesn’t happen that easily.
I’m sorry, though, it’s always a letdown to have something like this happen … to have that boogieman strike. Do try to give yourself a break, though. Sometimes life just happens.
I agree with Rebecca. ((()))
You wrote, “This space is supposed to be about sharing something useful with you, something you can take with you and improve your own lives.”
And my initial reaction (mind you, this is a reaction from a sympathetic reader, not another parent who can truly empathize with the experience) is that this IS sharing something useful. For those of us who will never live this experience, this is sharing another layer that we might never have considered, and it is deepening our understanding of the daily vigilance and fear and protectiveness you have. For parents of other children with their own monsters, you’re reminding them that they’re not alone in their fears and occasional mistakes and feeling like failures.
I see a great deal of value in this post. Also, my heart goes out to you.
Gut wrenching. It’s so hard to be the champion for your child and in wanting to believe the very best (yes, she can eat that) have this sort of outcome. I’ve done the very same thing in positioning my child (yes, he sits so well independently) in an unsafe place (except for when he falls and cracks his head on that table b/c of his seizures).
Thank-you for your honest.
You are being far too hard on yourself. Every parent makes mistakes … you are not the first or the last. Your daughter knows that keeping her safe is your #1 priority. Soon the decision making will shift to her to monitor her own health.
Rob,
You wrote that “this space is supposed to be about sharing something useful”, you have done that today with this post. You have shown that you are a good writer, an amazing father and above all human. You said you were complacent in the face of her monster, while that may be true, I would also say that you were hopeful. You want to give your daughter the moon, so as she fights this monster to “be like everyone else” it is easy to want to help where you can, and this food choice was supposed to be a simple help. Except it didn’t work out that way and became a horrific reminder that vigilance is better than being one of the crowd. It is very easy for me to tell you how wonderful you are as a father but it is quite another to believe it. My thought would be to follow in your daughters footsteps cry your tears, go through the nervousness but continue to love and use your big heart to embrace the love you have for your family and your intelligence to write your world in all it’s imperfect perfectness.
Exactly what I would have said could I have been that eloquent, Cheryl.
This was an excellent response. Seriously, spot on.
You’ve definitely shared something useful. Everyone messes up….even when trying to be nice we can mess up. It’s important to be honest, and open about not being perfect. I’m so sick of the super parent mentality we strive to act out.
But that sounds so scary. I sending metal hugs to you…not at all effective over the internet, but worth a shot.
I know you feel sick inside, Rob. But be thankful that you were there to save her. Be thankful she didn’t try the forbidden on her own, with no help within arm’s reach.
I don’t think you were being complacent AT ALL. I think you were exploring and pushing her boundaries–like you have to do every single bloody day of your lives. Can she do this? Can she handle that? Will she be successful? Will the benefits of success outweigh the risk of failure?
You calculated the risks, considered the benefits, and made a judgement call. The immediacy of the failure (having to rescue your daughter from choking to death) is what makes this boundary exploring/pushing so, so hard.
Although not the optimal way to learn it, this did provide a lesson in continued vigilance–especially for Schuyler. In all her understandable yearning to be like everyone else and simple eat what she wants when she wants, she can’t. And she is all too certain of that, now.
We all make mistakes as parents, Rob. And you need to forgive yourself and keep going. Beating yourself up is going to take away the energy you need to keep exploring and pushing those boundaries.
I’m so sorry that this happened.
It’s all too easy to slip into complacency when things are going smoothly, isn’t it?
I can totally relate! I have given seemingly safe candy to my food allergic daughter without reading the label and caused a reaction. Not fun.
While our first response has always been to protect her, we have been working on what “living with” food allergies looks like. We now feel it is important she experience allergic reactions from time-to-time, or she will not be ready when one happens. It doesn’t mean we are not vigilant, we are just trying to be okay with reactions and not think of them as mistakes.
Last week, my daughter accepted a piece of candy from a friend at lunch. She recognized the allergic feeling right away and asked to read the label – sure enough! it had one of her allergens. She chose not to panic, told her friend, knew she had access to medication if her symptoms worsened, and just rode it out. When she told me about the incident, I swallowed hard and praised her for a job well done. She is learning to “live with” her allergies. Hang in there!
Now that it is written down – let it go. I think as parents, we are supposed to feel guilty about something. As far as choking, I cannot think of anything more terrifying for a parent. BUT, even children without swallowing issues choke sometimes, and because you were prepared, YOU DID NOT FAIL! My pediatrician is always warning me about choking hazards for my 2 year old who does not have any disabilities. He warns me because although he and his wife both are pediatricians, both of their children who do not have disabilities have gotten choked, and they (the parents) were terrified!I too am a parent of a child with a disability, and I am always pushing to have others treat her as they would any other child. I do this knowing that there is a risk. There is always a risk, but I do for her what I would want someone to do for me. And I do it out of love. Who knows if one day, she may pay a price for the experience, BUT to do otherwise would simply not be living. I love quotes so please forgive me but here are two of my favorites:
The Dignity of Risk by Robert Perske The world in which we live is not always safe, secure and
predictable… Every day that we wake up and live in the
hours of that day, there is a possibility of being thrown
up against a situation where we may have to risk
everything, even our lives. This is the way the real world
is. We must work to develop every human resource
within us in order to prepare for these days. To deny any
person their fair share of risk experiences is to further
cripple them for healthy living.
Far better is it to dare mighty things, to win glorious triumphs, even though checkered by failure… than to rank with those poor spirits who neither enjoy nor suffer much, because they live in a gray twilight that knows not victory nor defeat.
Theodore Roosevelt
Read more at http://www.brainyquote.com/quotes/keywords/failure.html#P5TBqKAxy1U3uYyc.99
Thanks for writing this. While not life-threatening, I have done similar things with my daughter and felt awful about it afterwards. I always appreciate reading your blog and agree with the others who suggest compassion for yourself. Finding the balance of when to take risks and when to stay cautious is a difficult and we all are going to make mistakes. Thank you for writing this. Wishing you well.
Not complacency, Robert, HOPE. Her hope of having moved past that. Yours, that maybe she’s outgrowing some of what has bothered her about her condition. If we never pushed the limits a bit (and it sounds like this was a decently thought out, measured risk you took since she’d not choked in a long while), we don’t know what’s grown, changed, improved. It’s a data point, not an endictment of you as a dad. And you helped her get through it. You were simply hoping for her. Like we all do with our kids as they grow up with their special needs.
I think we overreact to our parenting mistakes because our children are already fighting just to survive in this world and when one of our mistakes make their battle more difficult, it feels like we have betrayed them.
You are a tremendous Father. We are all only human. I am so sorry that Schuyler choked. I could type so much here but I won’t. Simply put, we all make mistakes and we learn from them. Don’t beat yourself up too badly.
Mindy~
I truly believe the amazing parents are the ones who are so hard on themselves for the honest mistakes they make. It’s the bad ones that give themselves a pass.
Keep doing what you’re doing, advocate for your daughter, make mistakes, improve and forgive yourself. You’re amazing.
Robert,
No one will ever be as hard on you as you will be on yourself. I know because it happened to me and my 9 month old almost drowned. One thing it did teach me, though, was to be more forgiving to other parents who make mistakes that I once would have that of as unforgivable.
I am glad that Schuyler is all right. Be good to yourself.
Lisa
You did share something useful, which can improve our own lives.
Sometimes there are errors in judgment and they can range from inconveniences to fatalities. Everyone whose child is harmed while in their care has had a lapse in judgment, and most of them didn’t mean to cause harm. If we’re honest, we know that we’ve all made mistakes. We have to forgive ourselves – and then look outward. Maybe we can learn to forgive others, too. Some people acted deliberately, but most simply didn’t think things through completely, or didn’t have all the facts, and life will be better if we let go of the finger-pointing and accusations.
Definitely useful information shared. *hugs*
Oh man! I feel you! We have to be very careful about that type of thing too…and it’s just so very hard to be 100% on your A game all the time…especially when we have all grown up equating food with treats. It kills me to not be able to share that with my son. Hang in there! Hard as it is, be glad that you are able to do such a wonderful job 99% of the time!
oops! got my blog link wrong on the previous comment. Sorry about that!
Lesson well learned. Thanks for sharing such a profound experience. To err is human. Don’t let it impede you from being the tremendously loving dad you are.
I’m murmuring. And glad that she’s all right.
No sage words. Just love and hugs to you and Schuyler from another parent who has made more mistakes than I know how to count and has felt my heart bleed as I watched my children struggle. You do a fabulous job, and there’s always tomorrow.
I’m so sorry this happened to you and your daughter. I thank you for sharing your heart. It helped more people than you can ever imagine. I’m always telling parents to go with their heart. You did in this case and it wasn’t the best decision. I strongly believe that all things happen for a reason. God is using you in an awesome way here. My daughter was born with very little diaphragm. (congenital diaphragmatic hernia) I’m constantly asking myself what is right for her. Anyway wanted to let you know that I’m so glad you were honest. It helped me today.
~Terri
I’m sorry, Rob. You made a choice that any parent might have made. It’s not possible to guard against every inevitability and you went with a choice that looked like it made sense. Most of the time when we make those choices, we come out on top, and once in a while we don’t. So easy to beat yourself up over it, I know. But I hope you can let it go. We’re each of us harder on ourselves than we are on our fellow special-needs parents.
I wonder if there is a way to modify the food item in a way it is safe, or to invent a good mock item. Perhaps a nutritionist would help you. or a foodie. Love and prayers for Schuyler and for you.
Thanks for sharing your story. It’s always hard when something you do as a parent leads to a life threatening situation, but you obviously have the best of intentions so you shouldn’t beat yourself up too much for this. As Marisa said, it’s not possible to guard against every situation even though as a parent you try your best to.