The Isolation

I know we’re all feeling isolated these days, but I got to thinking recently about the isolation that many special needs parents feel.

It started with a conversation with a person I don’t know very well about travel. This person knew that I hate to fly and that I will not fly over water. I was forced to once against my will and I am not doing it again.

But we were talking about visiting Europe and that it is something I would like to do, but it’s basically off limits because I won’t fly there. She said I could just take a cruise there.

And then we hit the weird part of the conversation. Weird for me, not her.

Because, yeah, we could. But Teddy can’t. So I thought about saying that it’s on the list for when the kids are all grown up. Which it kind of is.

But the truth is that to be gone for that length of time (I think it’s 2 weeks one way on the boat) will be hard forever. Because Teddy’s not likely to be able to move out on his own. He’ll always be with us. So to be gone for 6 weeks, I’d have to find someone who will take him for 6 weeks. And that’s a long time. That 6 weeks includes getting prescription refills. Making and accepting supply orders. Performing 6 subq infusions. 336 times of reminding him to pee unless he’s started being able to wear a watch and actually peeing when it buzzes vs ignoring it. For the love of all things holy I hope it doesn’t still include 6 weeks of butt wiping, but it might. *shrug* Doctor’s appointments. Taking care of the things that come up – and they always come up. 6 weeks of being really really far away.

So then I’m at the place where I don’t know how to respond. I can be truthful. I can explain all of that. (and then likely also have to explain a ton more and answer a whole bunch of “can’t you just” questions.)  Or I can just smile and nod and say “yeah” because frankly this person is never going to follow up in ten years and ask about the cruise to Europe and this conversation isn’t a big deal in the grand scheme of things.

So I just said yeah.

But I feel like when special needs parents talk about feeling isolated, most people picture not being able to go out and be around other people as easily as others. Being left out because friend groups stop thinking about inviting you. And that’s a part of it, sure.

But this is the real isolation. Being alone even with other people. Because you can’t have really honest conversations, and because you don’t have as much in common with others.

Because when your friends are talking about soccer and rock climbing, all you can contribute is what your same-age kid is working on at OT.

Because when people suggest a cruise, explaining that that isn’t an option takes too much energy and requires you to share too much of your personal information so you just lie and say ok.

Because when your family’s talking about their kids’ favorite foods, you have nothing to contribute.

Because when you swing by the hospital library and they learn your kid is going to be in third grade (after you showed him three fingers, but he said 2 because your thumb obviously isn’t a finger, mom), they offer to get you a times table and you say I don’t think we need one, but thanks, and they respond with “oh, isn’t third grade usually when you start working on multiplication?” And then what do you say? Seriously. What do you say? You’re standing there with your kid and there’s another parent nearby and you’re having a pretty loud conversation considering the small space and now what? “yeah, probably, but he’s still working on cementing the concept of the tens place, so I think we’re a ways off from multiplication, can’t you just freaking drop it?” Of course not. No, you’re going to say something like “oh, we’ve already got a nice chart.” (which is also true, but also irrelevant, because you know darn well you’re not going to be pulling out that chart this year.)

THAT is what I mean when I say that being a special needs parent is isolating.

Yeah, it makes it harder to get out. It makes it harder to WANT to get out. But it also makes you feel alone even with other people.

The Walking Dead as a Metaphor for Medical Parenting

I’ve been watching The Walking Dead older seasons lately. It occurred to me how the lives of parents of medical-needs kids are a lot like the lives of people in a zombie apocalypse.

It is constant stress. There is no time for PTSD, just…DTSD (During Trauma Stress Disorder). This was what kept bouncing in my head all through the first season. The constant stress. The always looking over your shoulder. The never fully relaxing.

There is no safety. There is the illusion of safety. Sometimes, you can lull yourself into thinking you’ve achieved safety. But then your farm gets overrun by a herd of the undead.

You need ammo. For zombies, you need actual ammo. For medical needs kids, you need prescriptions, adaptive equipment, etc. – all of which can be just as hard to find as ammo is during an zombie invasion.

You have to fight for supplies. For zombies, you have to be prepared to fight the undead and also other living beings for food and other basic needs. For medical kids, you have to be prepared to fight doctors, insurance, red tape, and ignorant people everywhere for therapies, treatments, diagnoses, and other necessities.

You are safer in a group. As Andrea found back in season 3, and everyone else knew, it’s hard to make it on your own. You need people with you to survive.

Just when you think it’s safe to relax for a minute, a new problem presents itself. The group is all cozy in their prison, they’re winning against their original problem (the zombies). Then BAM! They’re hit by another problem. One they didn’t see coming.

But the people in a zombie apocalypse can see what they are fighting. They’re fighting real, physical beings. Medical needs parents are fighting invisible, sneaky, silent zombies. Our zombies don’t growl and shuffle. They aren’t distracted by fresh meat or flashy lights. Our zombies are silent, invisible shapeshifters who relentlessly pursue our children. It’s as exhausting as a zombie apocalypse.

New Diagnoses and Grief

Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of.

Well, ok. Two were things his doctors had already penciled in, but we needed a certain number of lab results for final confirmation and everyone would have been really surprised if the labs didn’t bear out those diagnoses. I’ve already dealt with those things, back when we first penciled them in.

One was a thing that most people who work with Teddy have suggested, enough times over the years that, though I wanted the answer to be “no,” I wasn’t at all surprised that the answer was “yes.”

The last one was a thing I asked about, fully expecting the answer to be “no, it’s just from these old things.” The answer was “yes, and extremely so.”

That’s the one that threw me.

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

We get to grieve over this stuff. Every new diagnosis, even if expected, even if we cognitively recognize that NOTHING about our child has changed just because there’s a new word on the list of diagnoses, requires some mental adjusting. That mental adjusting is grief.

 

The first thing I did was DENIAL. I was sad but kind of ignored it the rest of the day, and the whole next day. I danced around the edges a bit. Asked for resources, joined some groups. But I didn’t type the word into Google. I didn’t check the library for resources. I didn’t follow up on any of the recommendations. I just kind of ignored it.

Next? ANGER. I was mad. Not mad because of the diagnoses. Not mad at him. Mad at unfairness. For the love of all things holy, the child has so much to deal with, why does he have to ALSO deal with MORE THINGS? Can’t this one thing just be easy? Not even easy, can’t it just be the same level of hard we were already expecting?

I think I skipped BARGAINING, unless the “can we seriously NOT?” questioning counts.

But I did not skip DEPRESSION. Not, certainly, the can’t-get-out-of-bed, life-isnt-worth-going-on type of depression, no. But the I-don’t-want-to-do-anything, permanent-wrinkles-in-my-forehead, why-is-it-so-much-effort-to-feed-myself depression. Yep. Had that.

And I’m going to pause here again to say that it’s OK. That was ok. That was NORMAL.

Parents – we need to be kinder to ourselves. The world certainly is not. I can hear it already, dear readers. Some of you saying things like “my goodness, woman, put on your big girl panties, it’s just a new diagnosis. It isn’t even life threatening! What a whiner! What a weakling! Life isn’t about what happens to you, it’s about how you react to what happens, or whatever that meme says. What a wuss!!” This is how (some of) the world responds to this VERY NATURAL process of grief. Even in people who’ve experienced the death of a loved one, but ESPECIALLY in people who are grieving the loss of something less tangible. The world won’t be gentle on you.

You need to be gentle on yourself.

This process is normal! Grief after a new diagnosis is normal. (Not having grief after a new diagnosis is also normal – I certainly haven’t grieved every new thing.)

Give yourself this. Don’t beat yourself up. Don’t necessarily expect lots of empathy from others, but give yourself empathy.

Eventually, of course, we move on to ACCEPTANCE. I’m not there yet with this one, but I’ve certainly gone through this process enough times to know it’ll happen eventually. Want to get there faster? Let yourself experience the other stages if you need to. Let yourself be in denial. Let yourself be angry. Let yourself be depressed. Let yourself make bargains with God, the Universe, or whomever you’d try to bargain with. (I’m halfway through some ancient Roman literature, so I’m imagining talking to Jove or Neptune here.) Let yourself go through the steps that you need to take to get to acceptance.

You’re not going to need to experience this process every time, with every new thing. Sometimes you can skip right to acceptance and move on. But sometimes you can’t. Sometimes your psyche or your body says to you, “nope, not this time.” Pay attention. If your body or your spirit is grieving, you need to let it.

And it’s OK.

“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.

 

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.

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. 🙂