Our Teddy Bear's Journey

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

A Matter of Perspective

on April 1, 2012

I think about this stuff a lot.

The kidney mom group I’m in, there’s a lot of medical support. “My kid this…,” “My doctor that…” etc. We can throw around the medical jargon like nobody’s business. And because protocols and whatnot vary fairly widely from center to center, we can compare notes and make more informed decisions – or at least have more information to ask doctors about. (another blog post on this later.)

There’s a lot of just “this happened to us today,” or “I’m so frustrated,” or “I can’t deal with this any more.”

And there’s also some “regular folks just don’t get it.” The days that someone’s in the hospital with their kid who is struggling, struggling, struggling, and their friends on Facebook are happily living their normal lives and whining because their kid fell and scraped up his knee. The days that you would cut off an arm with a dull knife if your kid’s only problem could be a scraped up knee.

I’ll switch to first-person here. I have had days in the hospital, frustrated because I’m away from home and because Teddy’s miserable from surgery, and because people just keep freaking hurting him and he doesn’t understand and it’s gotten to the point that even removing leads or changing a diaper is just too overwhelmingly much for him to deal with, and someone on Facebook is complaining that their kid has a fever and I honestly find myself dealing with a lot of anger issues about that.

And the issues are MY issues. OF COURSE people complain about a fever. It makes sense. Fever is a miserable thing for a kid sometimes. It’s not that people shouldn’t complain because they should walk around feeling grateful their kid has working organs. (Because I shouldn’t complain because my kid is alive, right? I know parents who would happily trade places.)

But it’s nice to have a place to complain to where people understand that you don’t mean anything by it, it’s just mostly insane jealousy.

The other side of the coin is that I often sit here and think,Β  “I am SOOO happy for you that THIS is a major crisis.” And really. I am. I am genuinely sincerely happy that I know people whose definition of a Terrible Day, well, doesn’t involve an emergency trach change on the way home from the ER. Or a 911 call because your baby’s methadone wean didn’t go well about a month after she coded in the NICU. Frankly, I am happy that MY definition of a terrible day doesn’t involve these things.

Two of the other kids in our kidney group coded within a few weeks of each other, and a day or two later someone I know on FB posted how terrible it was that her kids all had some puking. And puking kids IS horrible. It is. And I considered telling her that two of my kidney moms had watched their kids code in the hospital in the last few weeks. Not to be mean, but because sometimes – sometimes – when you’re in the middle of things like puking, knowing that someone else is in a lonely hospital room watching their kid hover between life and death… well, it makes a lot of people grateful for the puking, and that simple change in attitude makes the situation seem not so terrible.

And then sometimes, it doesn’t. So I kept my mouth shut.

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5 responses to “A Matter of Perspective

  1. Stacey Feehan says:

    You are so right. I respect that while you are extremely frustrated you step back to state that you understand the various perspectives. We all have things to be grateful for and things that we stress out about (whether it be the health of our children or any number items that affect our everyday lives). Perspective is key–and to take it a step further, what you choose focus on can determine your perspective on life. Choose to focus on the positive and you will see the positive around you. Choose to focus on the negative and that’s what you will see. I do not claim to know how you feel. I try to be careful with my words so that I don’t offend. I wish others would be as respectful. Teddy, you, the rest of the family continue to be in my prayers. Take care, my friend.

  2. sarahtar says:

    Ach – don’t worry about offending me. I am not easily offended, and I get over it pretty fast. πŸ™‚ I can freely recognize that I have some major work to do in terms of moving to a better place with all of this. Some days, I’m fine. And just as many days, I say to myself that I can’t possibly handle this. I’m struggling, but it’s OK. I’ll get there.

  3. Stacey Feehan says:

    You are amazing! Not only are you dealing with the health issues of your infant, but you are undoubtedly sleep-deprived and not eating the best (necessary convenience food). However you keep moving forward, researching, advocating for Teddy, and helping others. Have a good day today.

  4. I think this is one of the “downfalls” of the internet age. People put things out there to everyone as opposed to tailoring what they say to an individual they’re having a conversation with. And if someone complained to YOU specifically about their kid getting a fever or scraped knee, you had every right to tell them to shove it. haha. It’s hard to know when to offer perspective and when to just keep it to yourself. We especially struggled with that in the NICU days when moms coming in would whine to me about their baby being there for a couple days while we had been there months. It’s terrible to ever see your baby struggle, but man, it drove me crazy. I usually would just leave the conversation and go bitch to the nurses. πŸ™‚ And am I the one you’re referring to with doing an emergency trach change or do you have other trach friends, too???? πŸ™‚ Do kidney kids ever need trachs? Always praying for you!

    • sarahtar says:

      You were the trach change to which I was referring, but I do know at least one kidney kid with a trach, too. I sometimes feel like there are two groups of kidney kids – those like Teddy with just the kidney, then then those with other related problems. Sometimes the kidney thing is caused by chromosomal problems that also cause developmental delays, and sometimes the bad kidneys can cause low fluid from the beginning (instead of just at the end like we had), which results in poor lung development. The lungs develop by the practice breathing a baby does in utero – without amniotic fluid, they are unable to do this, and they struggle with breathing after birth. A much higher percentage of these babies die in the first few months, which is why we’ve been so grateful all along that we at least had good fluid when it mattered.

      The NICU was so interesting. Each new baby, the parents with that shell-shocked look. The terrified one. And all the other parents sizing them up. The way the NICU here is divided up, though, not only allows for better distribution of resources, but it also spares the parents of the serious babies from having to deal with the parents of the babies that are practically fine. They have different “bays” of the NICU, and you’re assigned based on how serious your case is/how much nursing attention you need. The “just here for a few days” babies usually went to Bay 5, which is actually on a different floor. We were in Bay 2 and Bay 1. Bay 1 is only a few beds, and Teddy was always the healthiest one over there. It was scary having him over there, because we knew it meant he was more critical, but at the same time… man, most of the other babies over there were teeny tiny + having major problems. Gave me some much-needed perspective.

      At the same time, some of the babies in Bay 2 were “just” premature. They needed to stay for a few or months to work out some lung issues, or fight an infection, or just to grow, but ultimately, in a few weeks, they’d be fine and they’d go home and they were not expected to have long-lasting problems. And here I am with my relatively healthy baby, who’s going to go home, start dialysis, try to dodge infections in any of his tubes for a few years, struggle with growth, and ultimately get a kidney transplant. And, eventually, go back on dialysis and wait for another transplant. I found myself becoming jealous of the parents who would ultimately be able to put the NICU behind them and take home their normal, healthy babies. Because we’re in this for life. I really didn’t talk to other NICU parents much. I didn’t go to the group meetings. I just didn’t feel I would have much in common with them.

      It will be interesting when we start dialysis. The plan at this point is still NICU Bay 1 for at least a week or so because he will need the level of attention that Bay 1 affords. But he will be a giant (he was a giant over there when he weighed 6 lbs) and he will be SO HEALTHY in comparison.

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