Category Archives: quality of life, advocacy

I have one.

“So, how many kids do you have?”

I knew I would get asked that at some point. It’s a front line, nice-to-meet-you kind of a question. It’s a chit chat question, innocuous.

It isn’t a probing, tell-me-the-worst-of-your-life question.

Except that now, it is.

“I have one.” I said. I tried to leave it at that. This person is just a passing stranger, not someone whose entering my life for the long haul. In my heart, I still have two. In my heart, I am still a warrior mom, and infinitely proud of both my girls. But this person isn’t looking for my life story, he’s just looking for chit chat.

I have never been good at chit chat.

“Oh. With the minivan, I would have expected more.”

Did I mention I have never been good at chit chat?

To be fair, this was the car sales guy. I’m starting to think about trading out of my w/c accessible van, so it isn’t like I wasn’t expecting to explain why I don’t need it any more. It’s just that – this is mine. This is my heart, right out there for the whole world to see and judge. I was proud to be one of the mighty (there’s actually a website for special parents by that name, it’s very good), and now I feel like one of the fallen. I feel weak, and broken, and displaced.

And, dammit, I don’t want to share that like first name information. I don’t want shallow sympathy followed by awkward, where-the-hell-can-I-take-this-conversation-now? silence. She’s mine. She’s my heart. She isn’t for this person who means nothing to me.

But here I am in this world, where I will be asked this question. And I’ll deal with this – maybe I’ll get better at this over time. I guess we’ll see. I’m not good at chit chat.

“Funny thing about that.” I say. “You may have noticed my van is a little different.”

“Yeah, it’s handicap accessible.” He says. I let the inappropriate verbage slide. “You aren’t using it?”

“No.” I breathe out, and I move forward on this inevitable path. “I have one. I used to have two.”

I used to have two. In my heart, I still have two. I always will. But for this world, most people will only see the one.

Don’t be afraid to remind me.

It’s been almost a month since I lost Kate. That doesn’t seem possible, but yeah, February 5th, so… Yeah. Almost a month. I’d like to say I’m adjusting, but I don’t feel like I’m adjusting. On good days, I can go for several hours without crying. More often, I’m crying but still moving. Crying and washing dishes, crying and picking up Legos, crying and whatever. Functional crying. Other times, I’m an absolute wreck.


But I’m putting one foot in front of the other. I’m doing okay with that most days. Some days it feels like gravity has tripled, but… left foot, right foot. Repeat. I don’t know where I’m going from here, but I’m still moving.


A friend asked me the other day if it was okay to send loves, or if that might ruin a good day or a good moment. Another friend found herself in need of some portable ramps, and questioned whether it was okay to ask that favor from me right now.


I do get blindsided sometimes, but it isn’t by people. I was listening to the radio the other day… good song. And of course what I’m singing along with isn’t the actual song. It’s the song the band parodied of their hit. On Sesame Street. Because anyone who’s anyone has been on Sesame Street. And I watched that show for over a decade.


So, there’s that. There’s the school bus going by without stopping. There’re random school buses with the side door for wheelchair access – nowhere near my house, just passing by.


I frequently drive in the school zone for Kate’s last school, and find myself surprised that there are still speed zones, that there are still people there. Kate isn’t here any more, there’s no need for that place any more.


I’m reminded when I drive my van, that I no longer need.


I am reminded in my house, every second.


I frequently get sucker punched by my own mind.


You don’t need to be afraid of reminding me. I promise, I haven’t forgotten. You can miss her, too. It won’t make me miss her less, but it’s okay for us to miss her together.  It’s good to know that she touched you, too. And if I should happen to cry, just give me your shoulder.  You can even cry with me.

Death, simplified

I wrote this post not long after Memorial Day, and it got lost in the vault. I have taken an extended hiatus since Katie’s back surgery – almost two years ago now. I will be going into that more later. For the moment, I hope you enjoy this little bit of fluff.
This little memory doesn’t have a lot to do with anything. It is true that, as a parent of a child with lots of differences, I wind up trying to explain complicated things in simple ways – to children, to adults. I’m still working on it.

“These were people that died. We put their bodies underground. Then, we put a stone on top. But when I die, I’m not going underground, I’m going up to Heaven.”

This knocked me out of my own thoughts this morning. I woke up thinking about a friend who just buried her husband. A few years ago she buried her daughter. She put her eight year old next to the grave of her mother. This lady has way too much cemetery experience. (You can follow Karen at:
She can teach you all about grief and strength.)
Anna had her first cemetery visit yesterday. My parents put out flowers for family gone- for their parents, aunts and uncles, and for my niece’s dad, who died in a car crash last year.

So, how to explain the physicality of death to a five year old?

“Your body is just a house for your spirit. It lives right in the middle of you, where you feel joy. Some day, your body will die, and your spirit will break free and fly away like a butterfly. Your body will go underground, but you won’t be in it.

The people who love you and miss you will put a stone up to remember you.”

“Okay…?” This is what Anna says when her questions haven’t been covered well enough. “So… when do wasps die?”

When it’s cold? Probably. I went with that. At least I can take a decent stab at that one.

Portable Ramps from Patterson Medical

Accessible world. NOT.

In my pre-mom life, I thought the world had come a long way toward being accessible to all people. At that point, I also thought that ‘all people’ consisted of people sitting fully upright in basic wheelchairs and self-propelling. Oh yes, I had a lot to learn. 
I began to learn the difficulties of being on wheels when my oldest girl was still a baby, and all I was pushing was a standard stroller. I quickly learned which places had automatic doors – Sears became my default entry to the mall. I also quickly learned that most places don’t offer this convenience. I discovered that most of the places I want to go have at least one, and likely more than one step to get in the front door. 
When Katie was smaller, and her chair was smaller, it wasn’t such a big deal to bump our way up a stair or two.  In fact, when we went to make an offer on a house, after looking at about a hundred of them for one that could be easily modified to be accessible, our realtor scheduled our meeting in her office. Her office building was a split level. If you aren’t familiar with this style, think of a two story house, with the entry halfway up the staircase.  My husband and I muscled our daughter and her chair up about seven steps to keep the meeting.
So, while I may have been right in some sense (the world actually has come a long way toward being accessible), the thing I hadn’t realized in my past life is that we still have a long, long way to go. 
Even if we could get every business to be wheelchair accessible, what about visiting other people’s homes? What if my daughter wants to go play with a friend, and her friend’s house has three steps to get to the front door?
People are entitled to build houses however they want, as long as they meet the building codes. So, even if I think the split level design is collosally stupid, I can’t demand they not be built.
So, what to do?
We weren’t able to build a new house, so we got one that was close enough, and made some modifications, like adding a ramp. (Note to self, write more about ramps on another day!). We can’t build ramps everywhere we go, though. And we can’t really expect everyone we know to build them, either.
So, I was pretty excited the other day when I found… (drum roll) – portable ramps! While not as ideal as rolling through the automated doors of my favorite retail establishment, these do make life a bit easier.  I got a set of two individual ramps (about 7” wide each), which telescope from about 30” out to five feet. They are lightweight, have good traction, and come in their own little carrying case which fits easily in my vehicle.
They don’t solve everything – I will still have to pick my child up out of her chair and carry her inside if we have to go into a split level building, lay her on the floor, and then truck her 100 pound chair in. But, they do a good job of getting us over 2-3 steps (or, into most ranch style homes).
These ramps cost me a little over $200 from

. So far, I’m happy with them.

All zipped into one small package.
All zipped into one small package.
The ramps can extend from 3 feet up to 5 feet.
The ramps can extend from 3 feet up to 5 feet.
The ramp telescopes in on itself, and locks with push in buttons.
The ramp telescopes in on itself, and locks with push in buttons.
Ramps telescope to about 5 feet, which is a comfortable push for a two-three step run.
Ramps telescope to about 5 feet, which is a comfortable push for a two-three step run.
Ramps at 5 feet.
Ramps at 5 feet.
Contracted ramps fit together compactly.
Contracted ramps fit together compactly.
Carrying case.
Carrying case.
Ramp case.
Ramp case.

The difference


Women. Blacks. Immigrants. Women. Poles. Irish. Blondes. Catholics. People with mental health problems. Muslims. Vegetarians. Women. People with cognitive disabilities. Norwegians. Men.

If you belong to a group (you do – actually, you almost certainly belong to several. You have a gender and a race, for starters.), someone out there has made a joke about you. My father-in-law is fond of this one: What do you tell a woman with two black eyes? Nothing! Somebody’s already told her twice!

Har. Har.

The joke is poor, and hurtful. It’s also a common recipe for what many people think of as humor.

If you have to degrade a class of people to be funny, you aren’t funny.

But that’s not exactly what I’m on about today. There will always be stupid jokes like this, that are more about the dominant group trying to claim some imaginary and transient sense of superiority than about jocularity. It’s pathetic, but whatever.

When unibrowed fathers-n-law throw out trash like this, most wives shrug it off. Why? It’s simple: I know it isn’t true. Well, okay, abuse is true, and there isn’t a thing that’s funny about that. What I mean is this: I, as a woman, know that I don’t deserve to be smacked around, and that if someone finds this idea funny, the flaw is with him, not me.

Most of the common targets of this inept attempt at humor recognize this fact. Most, but not all.

There was an uproar a few years ago when a movie used the phrase, ‘Never go full retard.’ It was supposed to be funny. It wasn’t. It became the fine point on years and years of pejorative statements about people with cognitive disabilities, and the disability community focused on it in a concerted effort to say, ‘enough is enough’.

Can’t they take a joke?

No. They can’t.

A person with a cognitive disability will, by definition, have a harder time interpreting a joke (at their expense) and assigning it its true (lack of) importance. I know I don’t deserve to be beaten, and that my FIL is just a pitiful excuse for a stand up comic. I can shrug that off and move on. But someone who struggles with understanding every day life, struggles to make friends, struggles to hold even a marginal place in our ill-prioritized society… that person may very well not be able to place this type of statement in its proper place (the trash).

For the person with a cognitive disability, the joke really is on him. This isn’t funny, it’s just hurtful. This type of humor has no place in modern society. If this is the only type of joke you can come up with, you are not funny. Deal with that.

It’s a small, small world

The best definition I’ve ever heard for inclusion is this: everybody everywhere. Inclusion means letting the people with disabilities be where they are, whether that’s right alongside a neighbor without a disability, whether that’s working in a local store, or going to a local school. Inclusion means that everybody gets to be part of our greater community to whatever extent they want.

My daughter’s school district claims to understand this concept. They say that they are incorporating practices of inclusion in their greater plan.

No. They aren’t.

Katie has spent the last several years in what is locally called a cluster program. (I was tempted to use quotes there, but then I’d have to stop and make air quotes at myself, and that probably wouldn’t be good.) The cluster program could also be called a special ed room, or a self contained classroom.

Our school district has somewhere around thirty elementary schools. They have elementary “cluster sites” at three of them. (See, I shouldn’t have done the quotes, now I’m gesturing to myself in front of my computer. Add that to the muttering I’ve been doing lately, and someone is bound to take notice.)

So, despite the fact that we live in a neighborhood with lots of other little kids, and that there is an elementary school two blocks away, I get up at a quarter to six every morning, so that I can get my girl onto a school bus before seven. The bus will go on an hour long route and end up at a “cluster site” (yep, there I go again. Gotta quit that.) that is about two miles away.

About an hour later, I can look out my window and see all of the local children walking down my sidewalk to the elementary school that’s a stone’s throw from my house.

I admit that this isn’t as simple as getting the green light from the school. “Okay, Katie can go to school over here now.” She does have severe disabilities. It isn’t realistic to expect her to sit through fifth grade math, or English, or science. She needs therapies. She needs special equipment. She needs a teacher that can give her individual attention…

Wait. Why can’t she get those things at our local school?

Ah, yes. Money. If the school (ware)houses all the kids with special needs in one place, they only need one room. One teacher. One set of special equipment. One set of specialists.

At this point, Katie has become part of her current school’s community, and it would be a huge jolt to her if we changed the program. It will be changing, though. Because next year, she’ll start middle school. And, while this school district has been bussing her to one edge of the city for her elementary education, they now plan to bus her to another edge of the city for her middle school education. This means that, not only does she not get inclusion into her local neighborhood, next she wont even have the inclusion of the community of children who she has gone to school with for the last five and a half years. Except, of course, those who have also been stuffed into the cluster room.

I have spoken to the school board about this. They nodded politely (well, they weren’t all polite) and basically said they can do whatever they want.

I am honestly tempted to walk away. People who know me well know how extreme that is – I seem to have some sort of biological condition that prevents me from giving up even when it’s clearly the end game. But I am finding myself perusing housing listings in other districts, because right now I am so disgusted with this one.

But, that isn’t serving my community. Inclusion is good for everyone, not just people with disabilities. Unfortunately, an awful lot of people can’t seem to understand that fact.

You can read more about the Sioux Falls Schools Disctrict’s plans at .

A random story

Over the years, I have met hundreds of amazing people, simply by being Katie’s mom. This is one of many great stories I’ve been told.

When Katie was a toddler, I took her swimming at he local community center. A mom was there with her adult son. He was able to walk and talk, but an intellectual disability had been a significant factor in his life.

The mom told me that Jim was her second child. He had an older sister named Elizabeth. Elizabeth was only a year older than Jim, and a grade ahead of him in school.

One day years ago, their high school was having an assembly in the gym. This was Elizabeth’s sophomore year, and she was just starting to feel like she fit in. There were kids already on the bleachers who called her to come sit by them. She found her place, and waited for the assembly to get going.

Then she saw her little brother, sitting on the lowest step of the bleachers. This was his first year of high school, and it was hard for him to grasp new places and routines quickly. He hadn’t made any friends yet.

Elizabeth glanced at the group that had welcomed her in. These were the cool kids – the ones that would be cheerleaders, basketball stars, homecoming royalty.

She looked back down at her brother. Elizabeth knew, she knew, that if she aligned herself with him, she would never be accepted back into this group, back into this pack of kids that would rule the school.

“Excuse me.” Elizabeth said as she grabbed her jacket and stood. She could feel their eyes on her back as she made her way down the bleachers. She held her head up.

Elizabeth settled in next to Jim, and he looked over at her. A fabulous smile broke the clouds around his head.

The assembly was boring, as most are, and went until the school day was over.

The next day was amazing. But it was amazing in a very unusual way: nothing changed. Noone said, ‘Hey Lizzie! This isn’t the resource room!’. Noone stuck their nose in the air as she went by, or threw a cold shoulder or condescending glare at her.

Nothing changed.

Sometimes we make assumptions about people. A lot of the time we’re right- that’s why assumptions are formed in the first place. But sometimes we let our perceptions of what others think act as a barrier to being true to ourselves. And sometimes, when we overcome our barriers, we find they really weren’t that big.

So. Sweet story. What does it have to do with Katie, or me? Not much, but I liked it. And I do think that it had an impact on me – after all, I still remember it many years later. I think that it was a bit of a boost for me during a time when all I wanted to do was stay home with my screaming baby and not deal with all those people glaring at me. People who wanted me to control my kid. People who would ostracize us, or turn a cold shoulder.

Those people were as much a creation of my perception as anything. I have gotten braver about taking my child out in public. Granted, she doesn’t scream all that much now. But if she does, I don’t stress too much about it. I am much, much more likely to have people approach us in a gentle, almost reverent fashion, wanting to learn more about her.

How we Halloween

Katie was a cheerleader. Anna changed her mind at the last second, transforming herself from a monkey into a ballerina. She is a ballerina at least five days a week, so it wasn’t too tough for her to make that swap.

My husband was busy with work, so it was just me and the girls. Anna is four, and this was the first year she was really excited about trick or treating. Katie, I think, can take it or leave it.

We started down the block, and got into a rhythm pretty quickly. Anna got over her stage fright after the first or second piece of candy. Once she had mastered the rhythm (ding dong, trick or treat!, thank you!), she was happy to to set the pace.

Katie had her own rhythm, in counterpoint to her sister. Roll up as close as possible to be seen from the door, wait for her sister to do her trick or treat routine, and wait. Katie can’t actually say, ‘trick or treat’, but she can smile and be adorable.

The treaters were suitably impressed with my little ballerina. After taking care of her treat needs, they would usually glance out and spot her sister. Most of them would give Anna a couple more pieces of candy, with instructions to give them to her sister. Three people brought the candy out to her themselves. There were also a couple who weren’t able to see her at all.

Over the last few years, I have become a fan of ‘trunk or treat’ events. I’m sure they have lots of redeeming values, but I only care about one. They are held in PARKING LOTS. Parking lots are awesome for a girl on wheels.

Mini vs. Mickey – the rematch.

A couple of months ago, I found out that there was a newer, more advanced, more awesome version of the Mic-key button out there. It’s called the Mini-One. The Mini doesn’t stick out as far, so it makes life easier if you need a body brace, or belly crawl, or have a kid who likes to grab them and pull them out, etc. Naturally, I wanted one.

I jumped through the necessary hoops (why are there always hoops?), and got the new awesome thing for Katie. And… well, for starters, the largest diameter available in the Mini is a 14 French (4.6 mm). Katie had an 18 French (6 mm) button before. No big deal , but it did mean her stoma needed to shrink around the new button, and in the mean time it was going to be a bit floppy. Also, because the diameter is smaller, it is more likely to clog. I found this out the hard way. Katie’s Prevacid simply will not go through this tube. It clogs every time. I resorted to giving her this orally. It isn’t supposed to be chewed, but at least she was getting some of it.

Then I decided we had been better off with the old button. So, I tried to switch it back, but I didn’t have much luck with that. (See previous post for more on that.)

This week, it occurred to me that I could check with the doc about changing the button back. If it would require another surgery, that would be a deal breaker. But perhaps there was yet another piece of this equation that I didn’t know.

I called Katie’s gastro, and again was referred back to the surgeon. So, I talked with the the surgeon’s nurse, and she said they could probably dilate her stoma to get the larger button in. Woo hoo!

Well, okay, not totally woo hoo. Stretching out her stoma could be uncomfortable. So, I felt kind of crappy about that. But, having a button that fit her better overall, that did what we needed it to do, that didn’t sag – that outweighed the pinch of making the switch.

We met with the surgeon (again), and she asked about why we wanted to change back. Then she said that the last hospital she worked at had unilaterally sent all their Minis back – they hated them. So, I guess it isn’t just me.

Some people love the Mini. I think it has some neat features. In our case, though, the older technology is what works best.

There and back again.
There and back again.
No tears over switching back.
No tears over switching back.

Life’s full of tough choices, idn’t it?

Katie got her gastrostomy (feeding tube) a month before she turned three. Her pediatrician had been nudging us in that direction for the better part of two years, with Katie clinging by her fingernails to the third percentile all the while. She didn’t drop into that failure to thrive range, but the summer she was two I was able to pull the clothes back out from the previous year and put them on her again.

Why did it take so long to make that decision? Well, it’s complicated. I was a stay at home mom at the time, and we didn’t have any family nearby. So, I was pretty much completely immersed in my first child and her care. We spent years in feeding therapy, and it wasn’t uncommon for me to spend 8-10 hours a day feeding her one little bite at a time.

At the time, I had reservations that had more to do with me than with Katie or a procedure or anything else. I was pouring myself into her care. When it came down to really needing to take the surgical step, I felt like such a failure. I felt like if I had done things differently, better, whatever, she wouldn’t be in this position. I cried a lot the day we decided to go ahead with the g-tube.

I was also worried about becoming complacent. Working on feeding, going to feeding therapy, trying different equipment, trying a therapist someone else said was really good, searching for the magic food that would make everything work – it was exhausting. I was afraid that if we had the tube in place, I would give up. I wouldn’t do my best for my daughter anymore. I was so tired.

In hindsight, it was all pretty stupid. We were spending all of our waking hours on this, trying to keep the stress out of the equation, but of course that was impossible. Katie got her button, and we got the hang of using it. Prior to surgery, we had to give any meds precariously by mouth. If she needed Tylenol, I would take it and put a few drops on a little bite of bread, and feed it to her bit by bit. We called them Tylenol sandwiches.

We did back off on feeding therapy, and realistically, that was also the right thing to do. What kid wants to spend their life working on therapy? What mom wants to spend all their time with their baby pretending to be a therapist?

Katie learned to eat but she never did master drinking. She was nursed initially, and never would take a bottle. She also has a delayed swallow reflex, so liquids and anything thin or light is really hard for her to control. For the longest time, I felt terribly guilty. If only I’d just bottle fed her, maybe… Well, maybe lots of things. Maybe she would have been able to bridge that gap by continuing on a bottle into her toddler years, and who knows, maybe even to this day. Or, maybe she would have aspirated and died.

I’m done beating myself up over it.

We kept up feeding therapy for awhile, but eventually let it drop altogether. Katie hated it. I hated it. She enjoys eating, and does well with that. She still doesn’t like anything remotely smooth – no Jello or ice cream for this kid. She gets the rest of what she needs through her tube. She doesn’t mind this arrangement, and I have reached a point where I am at peace with it.

Every once in a while, a doctor will ask about this, and whether we are pursuing feeding therapy. I just smile, and let them know that we have what we need. It isn’t conventional, but what part of our life is? Different isn’t bad. It’s just different.

Well, angelfish, the solution to your problem is simple.
Well, angelfish, the solution to your problem is simple.