“When I was a baby…”

So. Last night, Teddy was sleepy and asking me in a sleepy voice to tell him about when he was a baby. What else did I do when I was a baby? (It started when he asked me when we got his IV pole.) So this led to lots of discussion about his infancy. Most of which is depressing. Every third thing I said was that he really liked to snuggle, but he didn’t want to hear that over and over, so we talked about hospital, and dialysis, and Nurse Jen, and Dr Jetton, and driving to Iowa City, and taking baths, and getting his tube, and getting other tubes and getting them out. We looked at pictures on my phone. 80% of which are in the hospital. And we talked about a lot of non hospital stuff, like that he loved Genna and would just stare at her all day. But man, so much of his life happened in the hospital. Heck, my favorite Funny Teddy moments are all medical-related. And it’s fine. It’s his life. I need to get past always feeling sad about his early years because I don’t want him to feel sad about them.
So today we’ve received another packet from the government about Teddy (it’s related to Medicaid). “How has this disability affected your life?” Also, I have less than an inch of space to answer that question.
How HASN’T being born with renal failure affected his life? I mean… there isn’t a single aspect of his life TODAY that isn’t directly impacted by that. Developmental delays. Sensory processing disorder. Eating. Balance and body awareness issues. sleep. speech issues. adhd. cognitive issues. anxiety. motor delays. Well, OK. The heart defect and the subglottic stenosis aren’t likely related. Do you suppose “in every way” would suffice? I don’t even understand this question – isn’t the nature of disability such that it affects your life fairly completely? Especially if you’re born with it? It’s like saying “how has being Caucasian affected your life?”

“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.

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.


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.

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. 🙂

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. 🙂