Tuesday, November 19, 2013

The Sick Kids

The 6-year-old son of a friend-of-a-friend passed away yesterday. His older brother has the same fatal, degenerative disease that he has and probably won't make it much past 10 years old, if that.

These are the kids no one tells you about when they're trying to convince women like me that motherhood is amazing. I know motherhood is amazing. It's not as if I doubt every woman who says they love being a mom.

But it's more complex than that. It's complicated. It's a crapshoot.

Sometimes it's not a life of Kodak moments and milestones. Sometimes it's a life spent shuffling between doctors and hospitals instead of ballet and birthday parties.

What are the chances of me having a sick kid? What are anybody's? There are the kids who are simply chronically ill with no major disease or disorder, who require more constant one-on-one care than a generally well child, and there are kids who, because of genetics or circumstances during delivery will need care not just until they're 18, or through college, but for the rest of their lives. And then there are the ones like this poor family's, who are so sick with incurable conditions that their lives are cut tragically short.

And it's not just the stuff that happens in the womb. A classmate who was in the same gifted and accelerated classes in elementary school got hit by a car, spent 6 months in a coma and woke as a severely retarded 12-year-old. Something as simple as a bee sting or a rogue peanut butter cookie changes some family's worlds. Anything can happen, and it does. Life is complicated that way.

I'm not suggesting kids like these are unworthy of love, or anything of the sort. Being sick isn't their fault, and it's not the parents' fault either. I'm saying that their care should be left in the hands of someone who wants the job and can handle the job. The possibility that my hypothetical children won't have the easy temperament, curious mind, and uneventful development as yours is something that I need to address. It's one of the driving forces behind my choice.

Because, honestly? I could raise the "perfect" child, maybe.

But that's not how this works. I can't save up a little longer, pay a hefty premium to get the luxury model with all the extra features, and have the best one delivered. I can't plug in the traits I find appealing or ask that someone clone my niece (because if I could guarantee that I'd get one just like her I'd sign up in a second). That's not how it works.

Also I know myself. I know how I think. Some women can handle a sick child with grace, even those who require full-time care. They are committed to their role as mother. To do that without a great deal of resentment would require such a dramatic change in who I am as a person that I just don't see it ever happening.

Unless I'm willing to take that risk, that something might happen to a child of mine that forces me to upend my life so completely that I can no longer have a career, or a social life, or a balanced partnership with my husband, or the travel that soothes my wanderlust, I have no business having a child. Unless I can say that yes, I'm willing to have a child and to love that child and care for him no matter what happens, I can't go there.

There is too much risk for a reward I do not need in order to be happy. 


Anonymous said...

The roulette spin of reproduction is something I think about too.

No one asks for my pity, but I feel very sorry for the parents (and siblings) of children with special needs. Imagine having a child who needs 24 hour care, who cannot communicate, and will never become a self-supporting adult?

I happen to think that the rewards of having children outweigh the costs, but there is no guarantee of having a healthy child. That alone gives me pause about having kids.

Anonymous said...

Totally agree with your post! I'm in awe that someone can write about this topic so honestly and so genuinely!
I discovered your blog 2 weeks ago, and I've been busy reading every post and every comment since! I am very glad to see that you are still writing it! I am 37 years old (almost 38) and getting married soon to a 29 year old man, and we are on the fence. We feel that if we had children, it would probably be because we gave in to pressure lol We are not sure, it is very hard to know how we really feel about that and how much is outside pressure.
But the one thing that really stops me is exactly what you wrote: I just can't imagine what I would do if I had a sick kid. I have no idea how I could cope. I know you find strength, etc, but… and at my age, the risks are higher.
I think I lean a lot more towards the childfree life, but it is a hugely difficult decision to make, and as you pointed out so rightly before, one you live with every day, even when you are not in age to procreate anymore.
Thanks for you blog, keep writing please!

Anonymous said...

You put into words the thoughts that I have been feeling about this issue. I provided residential care for children and adults with severe disabilities for many years. Over time I really got to know the families of my clients and learned their stories. So many of the parents, who were always entirely devoted to their children, confided that they never expected their lives to turn out this way. The constant care of a special needs child/adult can consume the entire life of parents. It's such a risk that nobody really factors in beforehand.

Anonymous said...

My friend found out when her daughter was just 1 that she had Type 1 Diabetes. She's now 7 and she still sleeps in their bed. They are afraid of making her sleep in her own room because she has had seizures in the middle of the night, and choked on her vomit. Both parents have been on antidepressants since her diagnosis. I'm 33 and just last year I decided I changed my mind about wanting kids. Its just so.... chancy.

Anonymous said...

Life is an adventure. It requires risk.

Anonymous said...

Thank you for your post and covering this particular topic. I have two healthy normal children and I am so grateful to have them. But I have wondered and worried what would happen if they became permanently disabled. I always knew I wasn't up for 24 hour care of another human being. I just so happened to get lucky and my kids so far are fine.

Anonymous said...

This post is exactly why I do not want to have kids: It's too much of a gamble. Sure, in a perfect world where there are no risks of disease or mental illness or disability, maybe it would be less risky.

I know of people who have dealt with the loss of an infant because the child had heart failure. Other children who have cancer. ADHD. Autism. Severe mental disabilities. These are not rare diseases, and there is no guarantee that your child will not have any health problems.

I have health problems that run in my family. Why would I run the risk of passing down diseases to a child who I would never want to have to begin with? In my opinion, it's just not worth it for me.

Anonymous said...

Yes, EXACTLY. It's one of my deciding factors too. Not just that I know i couldn't (and don't want to) provide round the clock care to a sick or disabled child, but that i feel any prospective parent should be at peace with that possibility before even throwing out the condoms.

I have friends with kids that never sleep, have learning difficulties or are just plain mean or slow. Those kids deserve unconditional love, but they wouldn't get it from me.

Last year i got a puppy. She turned out to be special needs for a while, in her own way. After two weeks of stress and broken sleep, i was a howling, deranged mess. If anything ever proved i made the right choice...

Ps i also have that "dream child" who i'd have in a heartbeat. She belongs to an old school friend of mine, and is absolutely nothing like me or my partner. So the chances of me conceiving her are kinda low ;)

Anonymous said...

Thank you for articulating this so gracefully -- I feel exactly the same way. When I was younger, I always assumed I would have children, but as I came into adulthood I started questioning that. For a long time I have been on the fence as to whether I would have no children (or maybe just one), although if I'm being honest I think I've decided I don't want any kids.

It is too risky. I *might* want to have a child if I could guarantee it was going to be the perfect child. But I'm not willing to risk the fact that it might not be. Not only could the child require extra care in some way, or be ill, but the child could also be a jerk, or just a really needy kid. I'm not willing to risk the life I know I love for a life that *might* be wonderful or *might* be terribly unsatisfying.

Anonymous said...

Thank you for such an honest post, it's a breath of proverbial fresh air. It felt like I should stop and say hello. I'm 27, live in the UK, and despite never(not even in childhood) seeing myself in a motherhood scenario I wonder, time to time, if I made the right choice. Often it happens after stumbling across another wonderful full-of-life blog with masses of those Kodak moments of a typical(in a nicest possible sense) family with a couple of kids, a dog, a house with a white picket fence and you get a glimpse into their life and genuinely feel happy for them but something makes you think- this is too textbook perfect. How often does it turn that way? Would I want to swap my-kind-of- happy that's quiet and "subtle" with just two of us for a possibility of a "textbook perfect"?
And while the issue you touched in this post isn't the reason I don't believe I(we)'ll ever have kids, it's certainly the most sobering, brutal, REAL argument against having them. I'm not a gambler- a few bucks on slots in Vegas is the most I'll do, so why would I possibly want to gamble with something so huge and life-defining.