Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

No, you don’t.

on January 20, 2013

I’m not into those ridiculous lists of “10 things to never say to…” whomever. They’re ridiculous. Most people who say stupid things are just not thinking, or they mean well, and they’re not trying to be offensive and hurtful… and those who are can’t be changed with a Top Ten List anyway. For the most part, I think people need to grow a thicker skin. And that includes me. I try not to assume that people are being rude, hurtful, or offensive on purpose, and I try to remember that even people who are awkwardly making me feel awful usually are trying to do the opposite.

One of the few things that really, really gets me going, though, is “I know what you’re going through.” There’s a small group of people who can honestly say that they do. And a slightly larger group of people who can actually come close. But if you’re not the parent of a child who was born with a serious medical condition involving one of his major body systems not working… then you don’t know. And to suggest that you do is ridiculous and stupid.

I have not had very many people say this to me, fortunately, though friends of mine have. (I’ve even had friends who have had people suggest they know what it’s like to raise a baby with kidney failure because their dog had kidney failure. Soooo not the same.)

Until Friday. A gentleman at the previously-mentioned nonprofit COTA, in response to my statement: “I hope COTA will take care to provide accurate information to people who call with questions in the future, because families with very sick little kids who need transplants just generally don’t have the energy or time to deal with extra crap like this,” said “I know exactly what it’s like, my dad needed a kidney transplant.”

To quote the Doctor, “What? WHAT?”

My mom had Type 1 diabetes. She struggled to maintain her kidney function for decades, but it was a losing battle. She eventually had to start dialysis when Wally was little, and I was her partner and learned how to do her PD (both manual exchanges, as well as with the machine) right along with her. She could have been placed on the transplant list, but opted not to, as she couldn’t imagine why she should get a kidney instead of someone younger, someone who needed that kidney to see their kids grow up, as she often wondered if she’d see us grow up. She ended up dying of a series of heart attacks in 2008.

So, I know what THAT is like.

(Incidentally, though it’s not that relevant, my dad had inoperable liver cancer and died in 1999. So I know what that is like, too. What I don’t know is what it’s like to have a parent die of old age.)

Let me assure you. Having a parent in kidney failure is nothing – NOTHING – like having your newborn diagnosed with kidney failure. An adult learning to do their own dialysis is nothing like learning how to do dialysis on your 9 month old. Accompanying a parent to surgery is nothing at all compared to handing over your baby to a surgeon 12 times in his first year. Driving your mother to doctor’s appointments does not compare in any way to spending 1/3 of your baby’s first year of life in the hospital, away from your other two young kids. A grown adult getting labs does not in any way compare with a BABY having to get labs drawn. Giving an injection to your parent is COMPLETELY different from giving an injection to your infant.

The experiences are not comparable. At all.

And the reality of kidney disease isn’t really that comparable, either. Adults don’t have to deal with growth issues. They can usually still manage to eat by mouth, even if they don’t feel that great. Most adults with kidney disease can do their own self-care. They can do their own meds. They can do their own blood pressures, their own dialysis care, their own feedings, their own everything.  The same is not true of babies or kids. Babies or kids have to worry about physically growing. They often have oral issues and can’t or don’t eat orally. They rely 100% on adults to do their meds, blood pressures, dialysis, weight checks, etc.

So to say that, because an adult you know had a similar condition, you know what it is like to have a baby with that same condition is, I’m sorry, absolute bullcrap.

Unless you have been the parent of an infant born with a serious, lifelong medical condition…you just don’t know. You can’t know. And to say you do know is extremely offensive.

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5 responses to “No, you don’t.

  1. Molly says:

    Love this! My child has had respitory failure twice in2012. My husband was fired from his job for staying w/ our son in IA City and one of his bosses said, “I know what it’s like, my child was in the ER lots for ear infections”……really…. those two things compare????

  2. Melissa says:

    @ Molly: Me, too! I nearly lost my oldest son to a GI disorder at 4 weeks (long story, not a serious disease, just a teen mom who couldn’t get anyone to believe her!). He was healed through the grace of God (and a four hour abdominal surgery), but nearly died during surgery. Then there are those people who say, “oh, your baby had a GI disorder and nearly died? yeah, mine had reflux, I know exactly what you mean.” Kinda wanna strangle those people!!
    Sarah: I understand what it’s like to nearly lose your baby, but not to have to endure that fight on a daily basis, indefinitely.
    My prayers are with you, and your family every day.

  3. When Evie was going in the NICU, struggling for life, we got a lot of “I know how you feel. My baby had to be in the NICU for a couple of days”! When she had surgeries, we had a lot of people say they understood because their kid had ear tubes placed.

  4. Stacey says:

    I have tried really hard to banish that phrase from my vocabulary. I’ve found that even when circumstances are very close (and maybe you can come close to knowing what it is like), it comes off wrong anyway. When someone is hurting saying, “I know how you feel.” really will not remedy the situation at all. There are other ways to state the same sentiment. “Let me know if I can help at all.” “I imagine you are feeling xyz, how can I help?” “I don’t know if you remember but my child (whatever the scenario) a few years back. Is there anything you wonder about that I might be able to help you with?” Just being there and willing to listen, I think is the best thing you can do in most circumstances. If a family is going through a low time, they really don’t care if you have been there. They just want to find the way out of that low area in their life.

  5. Dawn Mooney says:

    I just wanted to say. Stay strong and know that there is a light at the end of this long tunnel. I have a 15 yr old son who has polycystic kidney and liver disease. His only hope for a normal life(what ever that means lol) is to have a transplant. He has been through many surgeries similar to Teddy’s. He also had surgery at 6 months old to fix his hirchsprungs which is no nerves in he colon. However he is doing well these days and I know where you are having been there. God bless you and your family. My son is one of 5 kids his siblings are one of his biggest blessings.

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