Our Teddy Bear's Journey

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

“At least he’s so young”

One of my Black Friday (yes, I shop Black Friday and I refuse to feel any shame about it) stops is always JoAnn Fabrics. Yesterday, I ran into a customer, who asked about Teddy, which led to the lady at the cutting counter asking about his transplant, and a longish conversation about young children with heavy medical experiences. She said the same thing I’ve heard numerous times in the past – “it’s a good thing he’s so young and won’t be affected by all this.”

I understand the sentiment. The person who says this is invariably trying to find a silver lining, and also believes that a child truly won’t be affected by – or remember – their early life experiences. However, I really fail to find any truth or comfort behind those words.

To start with, I’m not sure there’s really EVER a good time for a child to be diagnosed with an illness or disease that is life-altering, life-limiting, and/or life-threatening. As with most largely negative life experiences a child may face, there are pros and cons to it happening at any age – but there’s really not any age when these experiences are ideal.

Quite a few people have expressed to me that they think it’s better for Teddy that he’s just always been this way – he doesn’t know any different. However, I really can’t get on board with this being one for the “pro” column. He’s never known a life that didn’t involve lots of people hurting him, lots of doctors, lots of hospitals, lots of nausea, being fed through a tube, and unnatural holes in his body… remind me of how this is an awesome thing?

Many people believe that babies don’t have working memories. But science is showing that this just isn’t true – and the experiences of thousands of medical-needs babies are certainly showing that it’s not true, as well. (How can you say he doesn’t have any memory, when he started having negative reactions to people in the green OR scrubs from a pretty early age – even when those people were people he knew and liked?)

I personally think it would be so hard to be experiencing things that are scary and painful and that capitalize on our most basic fears – being held down and being hurt – when you lack the ability to communicate about it. It seems like that would be worse than being able to verbalize your fears and your dislike of the situation, and being old enough to understand what is happening, why, and that it will all be over soon. In fact, I wonder if sometimes adults tell ourselves that it’s easier to deal with bad stuff when you’re a baby or toddler simply because babies and toddlers can’t tell us how they feel about it. Sure, they cry. But they don’t ask questions and they don’t tell us in plain words how much they hate it.

People also tend to believe that early life experiences are not remembered by – and do not affect – children when they’re older. I will agree that people can’t generally remember with any detail events that happened when they were just babies or toddlers. I don’t agree that those early experiences do not affect their lives. I’m not going to go as far as some (like our President) and claim that infancy is some sort of critical window that determines the course of a child’s life, since that position is not supported by the current body of knowledge of neuroscience, but experiences in infancy certainly play a role in forming the person we are to become. (here is an interesting article on the subject.)

I think we step into dangerous waters when we say that infancy – or toddlerhood – or preschool – or grade school – or high school – is a “better” time than any other time in childhood to have intense medical experiences, to wrestle with mortality and life-threatening diagnoses. There is no good time.

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How can I help?

I love this post. I particularly identify with this quote:

The times I have felt the most taken care of and touched by people’s service has been when they went ahead and just served us how they felt led. Many times after the fact we realize that it is exactly what we needed, even if it was just a drink from Starbucks or a run to the grocery store for us. These impact us more than you know. … If you feel led to serve a family, voice how you would like to serve them and then do it. Don’t wait on them to ask for it, because most likely they will not.

I know I personally have moved to asking people if I can do something specific that is within my ability to do and that I think they would appreciate; or that I would appreciate if I were in their place. “Can I bring you a coffee?” or “I’m going to the store this afternoon and would be happy to drop something by – what do you need from the store?” The person can still turn me down if it’s not a good fit (opening the door to, “is there something else you need?”) but I’m not putting it on them to come up with what they need.

This is partially because I’ve been so particularly touched by those who’ve messaged me while I’m in the hospital with Teddy, “I’m driving through Iowa City and I’d love to bring you something – what can I bring?” My answers have varied from Coffee to fresh fruit to french fries from McDonalds. It would feel awkward for me to send someone to the store on my behalf normally. I would not answer “is there anything I can do?” with “can you go to the grocery store and buy me some fresh fruit and some frozen Hot Pockets breakfast sandwiches.” Hello, bossy much? But when the question is phrased such that the person makes it clear they’re already planning to go to the store for me, but merely want to be directed in what specifically I’d like, it’s easier. (And people have generally figured out that what I mostly need when we’re in the hospital is provisions from outside the hospital, since I typically am not able to leave the building.)

 

And her #3 – Don’t Minimize. I’ve found that many parents of medical or special needs kids tend to talk more to other parents with their child’s same diagnosis, because that’s a safe place where most people will say something like “oh, crap” or “that sucks” instead of “oh, it’ll be fine.” At the same time, an “it’ll probably all be ok” response from these other parents-in-the-know is much more reassuring because it’s usually based on fact, not wishful thinking. I’ve learned there are people in my life with whom I don’t share a whole lot because it hurts to hear only denial (or blame) in return. Don’t be that person.

 

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The Battle is the Lord’s

Not mine.

David used but a stone to conquer a giant, yet his human mistakes cost him God’s blessing and brought sorrow on his family. What was the difference? The giant wasn’t his to fight. When David forgot only the stone was his and the giant was conquered by God, it set the stage for his kingdom to begin crumbling.

 

Read more here.

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Supporting Good Decision-Making (or, Vaccines)

I often get accused of being anti-vaccine. I’m not. But I’m also not in favor of just blindly following the recommendations of doctors or the CDC (but that goes for pretty much everything, not just vaccines).

The trouble with vaccines is that nobody is willing to have a conversation about it. If you ask your doctor whether X vaccine is really necessary, or if you bring them research you found (credible research) about a vaccine, or if you ask about delaying vaccines for your premature and underweight baby, you’re more likely to get a lecture than a respectful discussion. You’re also more likely to find one-sided propaganda than actual facts when you start to research vaccines; the CDC is no different than Natural News on this one.

I particularly enjoyed this blog post over at Confessions of a Sleep-Deprived Momma about the flu shot for her medically fragile daughter.

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Trauma and medical needs, helping kids and parents cope

This morning, I finally sat down to put figurative pen to paper on a blog post about the tough choices parents face during difficult or painful medical procedures.

This afternoon, I spent some quality time with my Feedly backlog and found this article on helping kids deal with trauma. “Trauma Protection for Kids with Special Needs | Different Dream” http://feedly.com/k/17HaRUJ

That was serendipity. 🙂

Teddy’s had more painful things done to him than I care to remember. Most while awake. Most necessary, and most without viable alternatives. It is an unfortunate fact of life for many medical needs kiddos.

And many parents of these kids struggle to figure out their role during these times. Do they stay? Do they leave? Do they help? Do they observe?

If you leave, the thinking goes, your role is one of comforter. Your child doesn’t associate you with the pain, just with the comfort. But then does your child feel abandoned? Are you leaving them just when they need you most? Will they become clingy, fearful that every time you leave the room, someone will hurt them?

If you stay, you can provide support for your child during the procedure. But then are you participating in the hurt? In helping hold your child still, or even simply observing the hurt, are you teaching them that they can’t always trust you to keep them safe?

No easy choices there.

Personally, I have always opted to participate in whatever’s going on. I can hold him firmly but gently, snuggling and kissing in addition to immobilizing. I personally feel like this is a better option than having only medical staff holding him. I can talk him through the procedure, giving voice to what he is probably thinking. And I can be right there with a big hug, snuggle, tuck into the carrier, clothes, blanket, bubbles, whatever he seems to need in the moment the procedure is finished.

We rely on Child Life a lot, too. I feel that I’m better at empathy and they’re better at entertainment. 🙂

Then, though the techniques in the linked article are meant for older kids, I loved loved finding that I’m already doing what they recommend to help kids deal with trauma. Teddy and I talk about what’s going to happen to him in advance, and I talk to him during any procedure, too. I talk to him about what’s happening factually, and I talk to him about how he may be feeling. “You dont like it when she holds your arm down. She holds it like that to keep it nice and still so we can be finished sooner. I know – ouchie ouchie! I hate the tourniquet, too. It’s so tight! You want to take it off. I’m sorry. We’ll let you pull it off when we’re finished.”

As he gets older, we’ll start introducing some therapeutic play, too. He’s already stolen enough tourniquets to open up a small clinic. 🙂

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Not necessarily “for a reason,” but more “used for good.”

I don’t like the phrase/concept that all things happen “for a reason.” I guess I don’t doubt that all things DO happen for a reason… but I do doubt that all things happen for some big Cosmic reason. That seems to imply that God’s up there with the strings in 100% control of what happens. And that doesn’t jive – in my opinion – with how the Bible portrays God. I believe that people can act outside of God’s plan – but that their doing so doesn’t necessarily foil God’s plans. God having a different sense of time than we do – seeing all times at the same time – means he knows what’s going to happen, what has happened, what is happening, but that doesn’t mean he MAKES it all happen. Just like how, in some circumstances, I know exactly what my kids are going to do – but that doesn’t mean I make it happen.

I do, however, strongly believe that God can use all things for good. ALL THINGS.

When my friend Abby’s first baby was born, she was born VERY early, and ended up needing oxygen for a while even after she came home. It was very scary for them, I’m sure. I didn’t know Abby then, but I know that having a baby with lung issues would scare *me.*

In addition to her health concerns, this baby also developed the lovely “breath holding spells” that Teddy has. Which scared her mom half to death, as you’d imagine.

A few years later, Abby and I meet and become friends. God clearly had a friendship in mind for us two and I’m so blessed to have her in my life. I have not been nearly the blessing to her as she has to me.

Fast-forward to last weekend. Teddy stops breathing and loses consciousness while crying. Yeah, I was scared. But I also knew – because I know Abby and we’re friends and we’ve spent countless hours talking about our kids – that that is a thing that some kids can do. I was scared, but I wasn’t, you know, completely and totally freaked out.

Since then, I’ve been able to learn from Abby’s experiences with this breath-holding thing, and talking with another mom who’s experienced it with a baby with health concerns was very reassuring to me.

Through her experiences, which doubtless seemed pointlessly scary at the time, Abby was able to be a (further) blessing to me in a time of need. That’s not WHY her baby was born early, with lung issues, and the genetic predisposition to stop breathing and lose consciousness. But it *is* a situation that God was able to turn around and use for good – to benefit another of His children.

I need to keep this thought further to the forefront of my mind. 🙂

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But it’s not FAIR!

You know, normally I can sit with Teddy through nearly anything and not cry. Bad labs. IV placement that takes over an hour. Wound debridement. Punch skin biopsy. Ultrasounds and Xrays that involve holding him down and listening to him scream for a half hour or so. I can get into a mental place where I just do what needs to be done and get through it. It’s the same mental place I worked on when both Wally and Genna were going through their Screaming Through BathTime phase.

I mentally focus on HIM and the medical people. What can I do to help the medical people get this done faster? What can I do to help Teddy calm down? Barring that, what can I do to reinforce to him that his feelings are valid, that I hear and understand him, and that I’m here for him and it’s OK to scream and cry? We’ve walked out of terrible IV placement sessions to be told “gosh, I love parents like you. You make this so much easier and faster by helping hold him and comforting him at the same time.” Which is nice to hear, because sometimes I feel like I could be doing better. It’s also somewhat confusing because I can’t picture another way to handle it. I suppose some parents just aren’t involved? Or are over-involved? I don’t know.

(Note: I don’t do their jobs for them. I do not feel it’s my responsibility to hold his arm still while someone’s trying to put in an IV in it. I can hold HIM still. I can hold his body with my arms and I can hold his head with my hand and do so lovingly and also firmly. But I won’t hold the arm down for you. If you can’t do that yourself, you get yourself a helper. I’m busy.)

But I have to watch the thoughts I let go through my head during these times. I have to be able to SAY things like “I know you don’t like it.” and “Ouch! I don’t like this! I want you to let go of me!” and “I know, this is no fun. You want to get down. You want your arm back.” without actually thinking about what I’m saying.

It’s possible. I focus on the words themselves, not their meaning. Because as soon as I start to really think about what I’m saying, then I think about what’s really going on. And how many times – how many times – we’ve been in the same position. I start thinking about how NOT FAIR this is. And then I start focusing on that. But this isn’t fair. It’s NOT FAIR!!!

IT IS NOT FAIR.

 

And that’s what starts the tears from MY eyes. It’s not fair. It sucks. Seriously, seriously sucks.

It’s the times when I stop just accepting Teddy’s kidney failure as just The Way Things Are and start thinking about The Way Things Should Have Been, or The Way Things Should Be or The Way I’d Like Things To Be. That’s what’s hardest for me – not that our life is so hard, but that his life is so much harder than I think it should be.

Those are the times I want to tell God that I think He and His Plans Suck The Big One. 🙂

So I usually allow myself to have those thoughts once we’re back in the car, just for a few miles, I let myself dwell on how much this all sucks. And sometimes I let myself entertain thoughts of the future… thoughts of the inevitable next transplant, thoughts of rejection, thoughts of the various viruses, cancers, etc. that are an ever-present risk. Sigh. And then I turn on the music and let it all go. There is nothing I can do about it.

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God Will Never Give You More Than You Can Handle

(thought I posted this a long time ago. Found this in Drafts, but am nearly certain I already published something similar. sorry if it’s a repeat.)

Who said this? NOBODY in the Bible, that’s for certain. God didn’t say it. Jesus didn’t.

Who does say this? Lots of people. People who are either trying to derive some sort of comfort from it, or people who are trying to be comforting.

But let’s call it what it is. It’s bullshit.

It’s also NOT COMFORTING. What’s the takeaway message there? That you should be able to handle this because God wouldn’t have given it to you if you couldn’t. That’s, um, not very comforting.

And where does God say this? Where does God say that He think YOU can handle things – anything – on your own? It doesn’t say that anywhere!!

Because, you know what? You can’t! You can’t. Say that right now with me – I cannot handle this. You can’t. I can’t. I cannot handle Teddy’s kidney failure on my own. You cannot handle whatever you’re struggling with on your own. You can’t. Doesn’t it feel good to say that all out loud like that? To give yourself permission to admit that you cannot handle it?

OF COURSE God gives you more than you can handle!

But.

He never gives you more than HE can handle.

Because it’s not about YOU. It’s about HIM. There’s nothing too big for God to handle.

The kicker here, of course, for the Christian (which is clearly who this post is aimed at) is to LET God handle it. I know I personally excel at giving things to God, for like 10 minutes, and then I say, “hey, God, you know what? I’ll just take that back. Thanks.”

Think about Jesus. Jesus even struggled with this the night before he was crucified – his soul was sorrowful to the point of death. And that was Jesus!! You are not Jesus. I am not Jesus.

For all of you reading this who have ever uttered that phrase, “God never gives you more than you can handle” in an attempt to be comforting, how about if you just never say it again? Instead, share the message with those you love that God DOES give people more than they can handle. But he never gives them more than HE can handle.

 

A few months ago, a friend passed along this excellent post on the same subject.

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A journey for me

When I was pregnant with my oldest, 10 years ago, I started a journey that would change my life. Parenthood AND a journey into the world of “natural” living, green living, whatever you want to call it. Cloth diapers, Attachment Parenting, organic foods, natural fibers, whole foods, natural medicine, reducing exposure to plastics and chemicals, etc. It was an exciting journey.

And particularly in Des Moines at that time – the whole “natural living” movement was just really getting started and I was there for all of it. And I was really, really into it.

And then I had Teddy.

Well, to be fair, I had started getting a little disillusioned before Teddy. First, there’s no possible way to do everything that all of the “experts” recommend. You’d be doing nothing but sprouting, soaking, blending, juicing, growing, drying, distilling, and hand-milling amaranth seeds you grew yourself to make flour for bread you knead by hand using only ingredients grown within a 5 mile radius of your house. And, second, a lot of what the “experts” say isn’t really well-supported by evidence, and too, too many people in the community have a very tenuous grasp on the “why” behind much of what they espouse.

But I was still very comfortable in the NL “world,” and though some people seem to suffer under the burden of believing that they have to be all-or-nothing, I was (and remain) quite comfortable choosing what worked for me and not worrying about being conventional for the rest.

But Teddy has started me on a different branch in the road I started down with my first pregnancy. And it’s a branch that’s been painful to follow at times. A branch that, while leading me in a good direction for me and my family, is also leading me further and further away from the conventional natural living “stuff” with which I am comfortable and familiar.

It’s a path that’s made me feel cut off from most of the people I used to feel I had the most in common with, and left me sort of dangling out here in no-man’s land.

And it’s a path that’s made me shockingly aware of how judge-y many of us in the “natural living” community end up sounding or being. And I hope that this new awareness is helping me to more respectfully honor the choices families make – either because they want to, or they have to.

Hopefully, in the not too distant future, I’ll wind up in a place that feels more comfortable to me than the place I am now.  But in the meantime, much like the Pioneers who settled the West, we’re learning as we go what things we can take with us on our new journey and what things are best left by the side of the road.

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Dear UnitedHealthCare

I appreciate that you have a program in place to reach out to your insureds after a hospitalization, and that you have a special program for transplant patients. It’s really probably a good idea.

I realize 99% or more of your transplant recipients are adults. And I realize that adults are MUCH different from kids. One thing you need to understand is that by the time a child receives a transplant, that child’s parent has generally grown very comfortable with calling up her child’s doctors with questions or concerns. That parent, in fact, probably has the phone number memorized, even if she can’t for the life of her remember her own sister’s phone number – or her best friend’s, for that matter. That parent probably also knows how to reach her child’s doctors via text or email, as well. And has probably talked to them in the middle of the night at least once. And has grown comfortable with the idea of waking up whoever needs to be woken up.

Because I realize that you’re trying to do a good thing, I will do my best to be cheerful and not grumpy when you call me every month for the next year to ask if I have any questions about my child’s discharge instructions, or to school me on wound care (no, I’m not washing with soap and water, but I am following the surgeon’s instructions, thankyouverymuch). Or to grill me on medications or ask if I think he’s drinking enough and maintaining an adequate activity level. I won’t respond, “no, but if I did, I’d just call the DOCTOR.”

Because you’ve never been a transplant mom, you don’t know that the second I thought something was off, I’d be on the phone. You don’t know that, when I wasn’t 100% certain on the new dose of Prograf, I called our doctor at 9:00 pm at home to ask, and I didn’t feel one tad bit of self-conscious about it. You don’t know that, if I couldn’t remember or wasn’t sure about something, I’d call.

I know adults aren’t like that.

But transplant moms, at least the ones I know, absolutely are.

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