People with healthy children say the darndest things…

Oh, they don’t mean any harm, but sometimes parents of healthy kids can say the darndest things, can’t they? Here are some of my favorites that I’ve heard, directly said to me or at least in my presence.

“I keep all those nasty chemicals far away from my precious child!” (referring to bleach)

Yes, I remember living in a world where I didn’t have to rely on harsh cleaners to keep my child alive, or to prevent my child from passing on things like C-Diff to my other children.

But instead of the fairly judge-y statement above, I might suggest, “I prefer to avoid chemical cleaners if possible.” (Or, you know, “I’ve been so blessed in my life so far that I am 100% confident that germs in our environment are no threat to the lives of my family” would work, too. Or, “All of our family members have immune systems that we’re confident can fight most germs in our environment, and I’m fortunate enough to not have had cause to ever stop to think about the really dangerous bugs out there.”)

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“There isn’t any reason to use hand sanitizer.”

I would suggest, “our family hasn’t had much use for hand sanitizer.”

Here’s a list of the times our family uses hand sanitizer. Note that they are all times when handwashing isn’t possible.

In between steps of multi step medical procedures.
After outdoor chores when Teddy was nonmobile, before touching him to bring him back into the house.
Frequently when in public places and touching things.
Upon leaving the hospital (we wash hands when we walk in the door at home).
For guests, at the door, so I don’t have to walk them to the bathroom to wash.

Handwashing isn’t always possible. But I’m grateful that some people have never had to worry as much about germy hands as many medical parents do.

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“Breastmilk is always best.”

Breastmilk is usually best. Some babies have medical conditions such that breastmilk, or breastmilk alone, is NOT what is best. Those moms probably feel terrible, and don’t need your judgy comments.

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“I would never <whatever>” or “There is never any reason to <whatever>.”

The one I most recently saw was “I would never give my child artificial hormones.” (Note: This person wasn’t talking about BGH in milk, but rather medical use of hormones.) Perhaps, “under normal circumstances, I’d never give my child artificial hormones.” Or, “I am thankful that my child’s body currently makes and utilizes all of the proper hormones in the proper amounts and proportions, and so I have no reason to need to consider using artificial hormones.”

This was said by a person who claimed to be a friend after they learned I was giving Teddy epogen shots (erythropoietin is a hormone created by the kidneys – broken kidneys don’t make any.)

You have to be careful with “there’s never any reason to” statements. Do you really mean “for most kids, there’s never any reason to….” or “in most situations…”? I think you do. And if that’s what you really mean, then say THAT.

SICK KID RULES

Since we’re in the middle of cold and flu season here, I thought it prudent to remind parents to keep your sick darlings at home. All day. Every day. Until they’re better.

One would think this would go without saying, but recently while sitting watching my daughter’s gymnastics class, I noticed one of the girls who’s usually inside the gym with her sister was instead sitting next to me with her mom. Coughing. A lot. When her classmates arrived for class, she started to run over to give them a hug and her mom told her no hugging. Why? Because if you’re sick enough to need to stay home from school, then you need to stay away from people. Like her classmates. But evidently not like me. I thanked God that I had begun leaving Teddy at home with Wally for gymnastics last year, because I might possibly be serving jail time for verbal assault right now if he’d been there.

SURPRISE. If you’re too sick to go to school and you’re too sick to attend gymnastics, you’re too sick to be sitting in the waiting room at gymnastics. If you’re also too young to be home alone, then you can stay in the car with your mom, right?

Teddy has primary immune dysfunction. While experts disagree at the moment on the precise nature of said dysfunction(s), the part of his body that fights viruses and cancers doesn’t work right. He’s also got secondary immune suppression – we’re suppressing his immune system on purpose. This means that the part of his body that fights viruses, bacteria, fungus, cancer, and literally everything else doesn’t work right.

This means he gets sick more easily, and he stays sick longer, and it’s harder to get over things.

And every illness brings the risk of rejection. As his immune system vamps up to fight the illness, it’s possible that the vamped-up immune system says “omigosh! Look at this! I found this whole giant kidney that does not actually belong here!! ATTACK!!!”

But even if you don’t have a kid with immune issues, and you have instead a kid who will get a cold and get over it with little issue, you STILL don’t want your kid to get sick. And you don’t want YOU to get sick. Because nobody likes being sick. If you don’t want YOU or YOUR KID to get sick, what do you think the chances are that literally everyone else on the planet ALSO doesn’t want to get sick themselves or to have sick kids? Yeah, pretty high, I bet.

So. I’ve come up with a list of rules for sick kids. Rules that should seem obvious, but evidently aren’t, based on the number of people who don’t follow them. Ready?

If your kid is sick, keep them home. Not just from school. From everything. Playgroup. Activities. Target. Everything.
When can they go back? When they’ve been fever free for 24 hours, vomit free for 24 hours, rash free for 24 hours, or when they’ve passed out of the contagious period for whatever illness they had. Ask your kid’s doctor for guidance if you’re not sure.
Do not assume that nobody cares if your kid shows up with X illness. I once heard someone say that “everyone wants their kid to get chicken pox, so I think we’ll go ahead and go to playgroup anyway.” Ok, please understand that not everyone wants their kid to get chicken pox. And while I can hear some of you gasping over those darn anti vaxxers, know that I’ve heard this ONE TIME for chicken pox, and a billion times for colds. “Eh, it’s just a cold, nobody will care.” Um, people will care.
If you’re pretty sure nobody will care, ask people before assuming. For example, before a playgroup or homeschool activity, drop a note in the Event discussion. “Hey, my kid has the plague. We were planning to come unless that’s a problem.” That gives people a heads up, at least. It still assumes that you and your kid are more important than anyone else and their kid, but at least you’re being up front. That gives people like us the opportunity to say, “oh, hey, nope. We’ll stay home.”
Do NOT just drug your kid up and send them on their way. Despite Tylenol, cough syrup, and anti diarrheal medicine, the child is still sick. Their body needs to rest and recover. Let them do that. They’re KIDS. Missing one day – or one week – or honestly even one month – of activities and school isn’t going to be the end of the world.
Let other parents know. If you were just hanging out with Suzie and Timmy the day before your child started vomiting like crazy, give Suzie’s and Timmy’s parents a heads-up. “Hey, I’m so sorry. Jimmy was fine yesterday, but this morning he started vomiting. I hope we didn’t accidentally expose you to something!” Most people understand you didn’t do this on purpose and will appreciate a warning.
Teach your kids good hygiene. Teach them to cough into their elbow. To wash their hands often, especially after the restroom, touching their noses, or dealing with snot in any way. To avoid others as much as possible if going out in public is necessary (such as staying in the car during gymnastics). Have them wear a mask if you must take them into crowded areas or areas with food, such as the grocery store.
Teach your kids to be considerate of others. Yes, these things are a hassle, but they help keep others from getting sick.
Follow other people’s explicitly stated rules. If your child attends school with a transplant recipient, for example, chances are good that at least the transplant kiddo’s classroom has specific rules for illness. Follow them. If your kid were allergic to peanuts, you’d want everyone to not give your kid peanuts, right? Well, the parent of that kid wants everyone to not give their kid illnesses if it can be helped.
Another example is if you know medically complex kids or adults. They often have rules and they’re usually pretty upfront with them. We ask that people let us know before coming to our house (or before family or friend gatherings) if they’re sick, if they’ve been sick, or if they’ve been around others who are sick. We ask that people remove their shoes when they enter our home and that they wash their hands. If you know someone who has rules like this – just follow them.

Guide to Surviving The Holidays With Your Special Needs (OR ANY) Child

Last year, I talked to so many special needs parents who were experiencing frustrating, disappointing holiday seasons. I’m willing to bet that their children weren’t any happier.

So how can we avoid this?

Let’s discuss.

Rethink your expectations.

Your holiday isn’t going to fit your mental ideals. Yes, you may dream of re-creating the Christmases of your childhood – or of creating the Christmas you wish you had as a child – but, especially if your child isn’t a typical child, that might not be very realistic. Create a holiday celebration for the child you DO have, not for the typical child you WISH you had.

Perhaps having wrapped presents under the tree in the days leading up to Christmas is your ideal, but you have a child with ADHD and major impulsiveness issues. If not “ruining the surprise” is important to you, keep those presents well hidden until the children are asleep on Christmas Eve.

Or perhaps your child with anxiety just really falls apart over the idea of having surprises. My youngest doesn’t prefer to be surprised by presents, especially when he knows far in advance that there will be gifts. For his birthday this last year, I just ended up telling him what some of his presents were – he was surprisingly fine with waiting to see them on his birthday, and knowing what was waiting for him helped him be excited instead of anxious.

How can you change your expectations, or what new traditions can you create, that truly help your special needs child enjoy him or herself?

Rethink Social and Family Obligations

Raise your hand if your special needs child LOVES holiday get-togethers and exhibits perfect behavior? Have your hand up? Skip this section. And yay. Truly.

For the rest of us, whose children get overstimulated, whose children hate crowds and noise, etc. – rethink those holiday obligations. All of them. The school party, the church service, the work parties, the friend gatherings, the family gatherings. How many do you really HAVE to go to? For family things can you consolidate or alternate? (We’ll go to the Smith family for Thanksgiving and the Jones family for Christmas, or We’ll go to the Big Family Thing this year, but next year we’re staying home.)

Or, how can you make those gatherings better? Can you limit the time you spend? Is it better for your child if you go somewhere, so you can leave as needed, or is it better for you to host so that your child can be in familiar surroundings?

And, of course, the perennial “my family knows my child is immune suppressed but showed up obviously sick anyway.” Don’t be afraid to leave. You aren’t obligated to stay at a gathering where the other attendants can’t respect your needs, assuming you’ve made them clear.

Get Family To Rethink Their Expectations

Yeah, this is tricky. Because many families prefer to pretend that they have only typical children in their family, and don’t want to acknowledge whatever difficulties your child or children may have. If you can get family on board, great. Explain your child’s difficulties (not their diagnosis, but their struggles) and how family can help. “Johnny really struggles with physical contact – you can really help with this by giving him space. He may not want to hug you, or sit next to you. It’s not personal, he just isn’t comfortable with touch.” “Rose gets overstimulated easily with all the lights, noise, and goings-on. We’re going to bring her headphones and she might need to take quiet breaks in another room – if you notice she’s stepped away, just let her have her space. She’ll rejoin us when she’s ready.”

Good communication in advance is usually helpful here.

What if Family Doesn’t Care?

But let’s say your family is like many, and they don’t care. (Or don’t seem to care.) The good news is, you don’t have to get your family on board to still take care of your child. Pack a bag of coping skills – physical and mental. Bring whatever helps your kid. Playdough. Weighted lap pad or blanket. Headphones. Electronic Device. Books. Toys. And when you notice your kid is ready for a break, or starting to lose it, just whisk him or her off to your pre-scouted quiet area for a little one on one time until he or she is ready to rejoin the group. No explanations necessary.

Your kid not going to eat what everyone else is eating? Bring food for them. Your kid not going to eat, period? Whatever. Don’t sweat it. (I have kids who just couldn’t eat when they were hyped up with excitement, quite apart from the tube feeder.)

You don’t need anyone else’s buy-in to take care of your kids.

“But!” you say. “BUT!! The mean looks, the rude comments!” Whose children are these? Not Aunt Susie’s. Yours. Mean looks, you can ignore. Rude comments, you can ignore or address. You’re going to have to play that one by ear. I don’t engage. I ignore, I purposefully misunderstand, I deflect with humor, I change the subject, or I leave the area. Experience has shown me that engaging isn’t worth the effort. But some people have great luck engaging in polite, educational conversation.

If you think your relative/relatives might actually be interested, chat away!

Inappropriate Presents

This can be tricky. Bear in mind that nobody HAS to buy you or your kid a present. Ever. In advance, if your child has particular needs, you can lay the groundwork for good gift ideas. “Hey, you might have noticed that Sam struggles with gross motor skills. I know you bought a bike for the other kids at this age, but Sam is still probably a few years away from being able to pedal successfully – he would, however, really have a lot of fun with .” One year, I just let family know that Teddy was developmentally still several years behind peers, and in particular with fine motor skills, so he wouldn’t be able to use things like puzzles that require fine motor skills, and if they had any questions about the appropriateness of a gift, just to ask and I’d be happy to help.

But what if your kids get gifts that just don’t work? They can’t eat much orally, and they were given candy. They can’t hold a pencil and they were given coloring books. In general, the only appropriate response to a gift is “thank you.” Even if, even if, even if. You may disagree, that’s fine. But in my opinion, being rude doesn’t solve anything. Say thank you and move on.

What if the gift giver asked for ideas and then got something else? Say thank you and move on.

What if the gift giver knows that the recipient literally cannot use whatever the gift is? This appears trickier than I think it really is. Think about the gift giver. Are they clueless, do they have difficulties themselves, or are they just mean? Clueless and difficulties can be forgiven – it really is the thought that counts, even with our special kids. Meanness – well, that’s really up to the individual to decide how to handle, and how you handle it will depend on your long term goals for that relationship.

Teddy’s Make a Wish trip to Disneyworld

It was super awesome!

I’m posting a few pictures here, but here’s the link to the album on Flickr if you want to see more. Not too many more, but a few more.

I’m working on a post with tips for Wish families.

We had a blast. Teddy had fun, Genna had fun, Wally had fun. I had fun. Randy had fun. We all had our frustrations, too, and it was far, far too short, but it was fun. And tiring!

Okoboji

I misspoke in an article I wrote a while back and said we hadn’t been on vacation since Teddy was born. I managed to space off Okoboji when he was 6 months old. We usually go every year (we have a timeshare) but skipped last year. The kids were excited to go back this year. And even though it’s at a lake, with a beach, and the beach is sort of the main activity, and Teddy can’t go in the lake, we all had a great time. 🙂 (Lakes are generally off limits for transplant kids. Too many nasties.)

We were hoping he’d play in the sand and not really notice the lake that much. Ha. hahaha. That didn’t work out.

After 10 minutes of crying about wanting to get in the water, Teddy decided it would be OK to go for a walk around the docks with mom. He was annoyed mom make him hold her hand.

There was more crying and attempting to jump into the lake. Then he discovered the wheelchair ramp dock, which was super awesomely fun.

He was watching his siblings frolic in the lake. I was afraid he was going to start throwing a real honest to goodness tantrum. He didn’t.

Gross. She got out of the lake, then laid in the sand while dripping wet and proceeded to cover herself.

This is the outdoor pool, and Teddy really just wanted daddy to hold him in the water. He started getting sleepy and had daddy hold him cradle-style and just float around in the water. I thought he was going to fall asleep, to be honest, but he didn’t.

Genna is far more timid about the water, but was very brave and got to the bottom step by herself.

This the indoor kid pool. Teddy is NOT timid about the water. He was like, “oh, water up to my armpits? Ok.” He had a really hard time maintaining his balance and slipped under the water several times. No biggie. I mean, I was right there and fished him out, but he was totally ok with it. That said, he was not interested in anything that did not involve his feet on the floor of the pool. No floating. No me pulling him by his hands. No floating on noodles. Just standing and walking.

Genna finally worked up the courage to use her pool noodle to float with without keeping a foot on the bottom. She wouldn’t go in the shallow end of the big pool, but did kick around the kid pool quite a bit.

Genna’s butterfly.

Teddy preferred to draw on the deck.

And Wally.

More deck.

This day at the beach was better because Genna stayed with us and played in the sand for a while instead of going in the lake right away. This picture shows Genna making a sand castle and Teddy appearing to be minding his own business and playing on his own. It’s all an act.

He was just waiting for an opening to knock Genna’s castle down. He can’t think of any reason anyone would build anything unless it was so that he could knock it over.

What?

Wally got a hole in one playing mini golf.

Teddy threw his golf ball in the bushes and then decorated the sidewalk.

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Last time we were at Okoboji, I was pumping all the time, trying to keep up with his exorbitant needs. The one time I took him to the pool, he basically hated it, everyone in the area stared in shock and horror at his scarred body with the PD cath, Gtube, port, and dressings, and I had to do a sterile dressing change as soon as we got back. In fact, I had to do several sterile dressing changes during our trip.

It was so nice this year to not have to do sterile dressing changes!! And to not have the horrified stares from people. People still stared, but the look you get from people who see a Gtube (though they likely don’t know what it is) is markedly different from the look you get from people when they see your 6 month old’s little body absolutely covered in hardware and bandages. And yes, screw them, but even so… I’m not usually one to let the looks from other people get me down, but that was tough to take.

Kidney Walk photos

You can see Team Noncomformist here trying to blend back into the group, lol.

This is the large group. We were in the front at one point.

Team Teddybear!

Kidney Walk

The Central Iowa Kidney walk was yesterday and Team Teddybear was representing! Technically, the team was Team KIDney Warriors, but Team Teddybear was the only component of the KIDney warriors to have anyone there.

This year’s walk was much more of an “event” than the first walk we went to, which was awesome. It was at the Fairgrounds, and though the route could have been more scenic, it wasn’t bad and it was a lovely day. I think they need to put a transplant recipient in charge of Germ Control for the event, though, lol. Evidently Team Teddybear should be called Team Nonconformist. I’m not a huge fan of crowds, nor of walking from here to there and back for no reason whatsoever, so when they told everyone to move from where we all were (literally, everyone) to another place a few hundred feet away to release balloons (humorously, directly into a tree), many of us stayed put. For one, many of our kids weren’t about to let their balloons go. For another, we were happy where we were, and since we didn’t plan to participate in the balloon release, we thought remaining where we were was a perfectly acceptable choice, and actually allowed for better viewing of the balloons. I didn’t realize some guy on the loudspeaker was yelling at us to come join the rest of the group. But I would have probably ignored it anyway, lol. We were fine.

Balloon Release. See? Better pictures from over where we were.

mmmmm…yogurt

My sister drove over from Omaha and my cousin’s wife Heather and her son Nate drove down from Alta.

Teddy and his donor Tiff. Wish we would have thought to take pictures before the Walk, when he was still awake, lol.

Awkward.

When we got home, the kids all played outside. (Which is amazing in itself – Teddy spent the first several “outside play” days this spring standing at the fence crying to get back inside, but he’s moved on now to enjoying being outside after a few minutes, and even taking his shoes off and walking around the yard barefoot. AND he loves to play in the sand.) We came in when it started getting dark, and Teddy was soooo tired. He had a quick bath and then fell asleep before 9. 🙂

Amazing Company – Dannon

So. You know how Teddy’s not really into eating? He was eating shredded cheese for a while, but now he won’t touch it. He will put chips in his mouth (not crackers) and chew, but then spit them out. He eats some yogurt and actually swallows it. He really likes the wrappers that chocolate comes in. 🙂

And then a few weeks ago, at the store, I bought the kids some Danimals smoothies as a treat. Every once in a while, I’m nice like that.

And then Teddy drank three or four. In one day.

What? Yeah.

So I bought some more and then also started trying to replicate the recipe. Even if I put the home-made smoothie in the Danimals bottle… no dice.

Alright, Teddy. We’ll do it your way. So, we bought some more Danimals.

And then one day I decided to contact Dannon about coupons. I’ve asked a few other companies for coupons in the past and had good luck, I figured it was worth a shot.

I told them a little about Teddy and why I was asking.

And then today, this showed up:

Actually, not just this but a whole bunch of them. Whoo hoo! I’m just blown away by the generosity of Dannon. 🙂

Central Iowa Kidney Walk

The Central Iowa Kidney Walk is coming up May 4, at the Fairgrounds, registration starts at noon and the walk starts at 2.

Click here to join our team and walk with us, or if you just want to donate.

See these people? Don’t they look like they’re having fun?? They ARE. Because the Kidney Walk is SUPER FUN. All the Cool kids are Doing it.

Thanks!!

Easter and Science Center Photos

Teddy was rather unimpressed by the whole Easter Egg Hunting deal. He could not have cared less what those big plastic things in the grass were, he was vaguely interested in their contents, but mostly he wanted us to stop putting them in his basket, which was clearly the holder for NerNer (Mater).