Friday, June 4, 2010

a conversation with my youngest child, age four

   "Little Child," my four-year-old, has despite his many health problems always been very advanced in his executive functioning, psycho-social, and verbal skills.  This is a sledgehammer of cognitive dissonance to the face when you see him in action given his diminutive stature alone, but if you've only ever mothered two developmentally delayed little boys and then have a child like my youngest it's downright surreal.

   All parents know that someday we'll have to answer some pretty uncomfortable questions from our children; it's part of what we sign up for along with poopy diapers, sleepless nights, catching vomit in our bare hands, and elementary-school music programs.  I've gotten off easy so far in that my children still believe that marriage (be it between a man and a woman, two men, or two women) is about nothing more or less than having help raising whatever children you have via parthenogenesis or adoption and not getting cold in bed at night, which they will continue to do for as long as I can keep that myth alive and/or until I feel they are developmentally ready to hear the more complete array of ways that one might end up a parent.

   When our children have special needs, our parental obligation to explain more and more complex things as our children get older can become a more difficult burden to carry than that of the average parent.  We have to discuss psychological testing, invasive medical procedures, adaptive or durable medical equipment, all of the ways that a body or brain can be different from those of most other people, and sometimes we have to talk about surgical risk, long-term prognoses, and treatable versus curable conditions.

   Little Child asked me a question recently that I couldn't answer, one I'd thought about a lot but wasn't expecting quite yet (not that it would ever be an easy converation to have).

   Mommy, will I still have my tubie and need formula when I'm a grown-up?   

   I told him that if his stomach didn't keep getting better, and if he wasn't able to start eating enough to stay healthy and strong, he might still have his mic-key button and need to take formula through it.   

   Well, but it is getting better and I eat a lot when I don't feel too sicky.

   Oh, crap, I didn't want him to feel like it was his fault!  I quickly said that he couldn't control whether his stomach would keep getting better enough for his body to let him eat more, and that I was proud of his eagerness to try new foods and his patience with his body when his stomach just wouldn't let him have a favorite food he'd been looking forward to eating.

   But grown-ups don't have stuff like that!  I don't want people to think I'm a baby!

   I told him that some people would never understand people who were different from them, no matter what made them different, either because they were afraid or because they had small little minds, but that plenty of grown-ups' bodies needed special help from tubies like his or different ones.  Your stepfather, I told him in a flash of inspiration, used to have a tube coming out of his tummy when he was a grownup!


   Yes, really, my husband, who'd been sitting nearby listening, informed Little Child.  It went in right here, he said, lifting his shirt and showing Little Child the scar, which he inspected closely.

   Remember when we talked about your stepfather's kidneys, I asked Little Child.

   Yes, they got very sick and died.  Then he had to get a new kidney, and it was surgery, so they gave him sleeping medicine so it wouldn't hurt.

   That's right!  I high-fived Little Child and enthusiastically continued to explain that while his stepfather was waiting to get the new kidney--

   Why did he have to wait?  Why didn't they just give it to him right away?

   Oh, damn.  I quickly said that it had to come from another person and be just the right kind to match, and that someone who doctors couldn't make better had to decide before they died and didn't need their kidney anymore that it was okay for doctors to give it to somebody else after that happened, and that sometimes it took a long time for someone to make that generous choice whose kidney would work in the body of a person who needed one.

   But if his kidneys died, and he didn't have the new one yet, didn't that make the yucky stuff build up in his blood, like you said it would if the new kidney gets sick?

   Yes, I said, relieved to be off the topic of organ donation and wait times for today, and so he had a tubie that he would use every day to put special very clean water with medicine in it into his belly, and then take it out when it was dirty, and that cleaned his blood.  When he got his new kidney doctors took that tubie out, but he had it for a long time, and he still did everything he does now, he just had to do that, too.

   I still really hope I don't have to still have my tubie.

   I know, I told my baby, scooping him onto my lap.  So do I because I want you to be healthyhealthyhealthy!  I gnawed on his neck a little, and he curled up like a shrimp and giggled his baby giggle.  I stopped gnawing and said but y'know, you're healthy and happy right now with your tubie, so there's worse things than if you have to keep it, and you'll still be my favorite little hot dog, and then I gnawed on him some more.


   What difficult talks have you had with your kids about their diagnoses, prognoses, and need for specialized medical or behavioral help?  Let's talk about it in the comments.


MFA Mama also writes a personal blog that you can find here.




  1. My six year old knows he has ADHD, and was quite proud of it the other day when an older neighbor-kid mentioned that his friend had ADHD. My son piped up, "Hey! I have ADHD, too!" As if it were a badge of distinction and honor.
    He's also asked me if he has autism. (He goes to a therapeutic school with lots of kids who have autism.)
    Right now, he doesn't seem to have a negative connotation with any of his diagnoses, and for that, I'm happy.

  2. My 13 year old daughter, Betsy has Spinal Muscular Atrophy Type 1. She lost the ability to suck, swallow, cough and breathe at 4 months. Despite all of this, she thinks she is famous. She is a rocker. She's been to many more concerts then I have. She's met and had her picture taken with Miss America, Peyton Manning, Styxx (lol) and all of the top 10 American Idols for the past 3 years.
    Every morning during her summer vacation she wants me to get in bed with her. This is when she gives me the instructions for what she wants to do that day. It is also when we have "talks", as she calls them. Last week she wanted to talk about formula. She doesn't want it anymore. She wants food. I asked her what would happen if we put food in her mouth, where would it go? She answered, "my tummy!". I said, no, it would go in your lungs. Asked her, "do you want food in your lungs?". She said no.
    She went on to con her dad into buying yellow apples to put in the food processor so she could have them via g-tube. At some point soon we need to talk about the specifics of her horrendous disease. Not ready to burst her huge self image bubble yet.

  3. There are times when I find it difficult to make decisions, but still have to do. I know people always have emotions so that there is no justice. But I still hope.