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A while back, we were at a family occasion and my cousin asked me what color party favor Lizzie would like. I almost made that decision for her,  before realizing that she could make it herself.  I told my cousin to hold them up and ask Lizzie which one she wanted.  She is capable of making those choices.  Sometimes being non-verbal people don’t know that,  or they forget. Even Mom sometimes forgets.  Yesterday we took our annual trip to the Wisconsin State Fair. We had a wonderful day.  At the end of the day, Lizzie played the duck game.  Most carnivals have one.  It’s the game where you reach into the “pond” and pull out a rubber ducky to win a prize. This is the only carnival game that Lizzie can consistently do,  so we usually seek it out so she can do it.

Yesterday after her duck game,  she got a prize.  The man running the game indicated which prizes she could choose from.  I asked Lizzie while touching them,  “So do you want a ducky or a fish?” The fish got no reaction,  so my next question was,  “do you want a pink ducky or a blue ducky?” This also got no real reaction. Then I realized that the toys were attached to a pole at the corner of the both.  There was no reason Lizzie couldn’t pick out her own prize.  Dad rolled her up close and I asked Lizzie again,  “Do you want a pink ducky or a blue ducky?” I touched the prizes as I named them figuring Lizzie would reach out and grab one to make her choice. Lizzie reached down below the ducks and grabbed an emoji pillow.  It was laughing so hard it was crying. It was perfect,  and I realized I’d almost made Lizzie’s choice for her when she could make it herself. We handed her the emoji and her face lit up. Even Mom needs to take a step back sometimes and let Lizzie make her own choices.

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This morning we had to go out.  I got Miss Lizzie ready,  but when I was done and put my arms out to ask her if she wanted to go,  she turned her head away and didn’t come to me like she usually does.  She wasn’t being difficult,  but playful. She was smiling as she was ignoring me.  Usually she tells me she wants to go by practically leaping into my arms or pulling on my arms. We didn’t have time to figure out what she was up to because we had to get her brother to band camp,  so she had to go.  Her dad scooped her up and moved her to her chair. End of discussion. 

This afternoon I had planned a trip to the mall after picking up her brother from school. Again after getting her ready she was playing with me.  Playful and coy. Sitting just a tiny bit out of easy reach, turning her head away from me with a big smile on her face.

The dogs started dancing just outside her door letting me know they needed to go out. I suddenly realized in our haste to leave the house early that morning I’d forgotten to water my garden. So I put Lizzie’s bed rail up. “I guess you can stay home with Dad.” I told her.  “See you later.” I waved as I left the room to let the dogs out.

I went out with the dogs and watered my garden. I was probably gone all of five minutes. I opened the door to hear someone yelling loudly from her room.  “All done.  All done. All done.” Over and over. Someone was done playing games and wanted me to know she still wanted to go out.

I went back in her room and she stood up by her railing. Someone was really ready to go. With minimal coaching she moved to the end of her bed so I could put her railing down and helped me transfer her to her chair. I love when we get these moments of clear communication and I love that she used her words to tell me she was ready to go. 

We spent the day at Woodfield Mall while Michael completed a merit badge at the Microsoft Store. Trying to keep Miss Lizzie occupied at a mall for 3 hours is a challenge, but the bathroom situation is enough to make a special needs mom cry. I know, I almost did.

It’s about a 40 minute drive to Woodfield for us,  so by the time we arrived and Michael was settled in his class Miss Lizzie was gagging herself.  For those who don’t know Lizzie, this is a sign she needed to be changed.

This mall is massive and multi-leveled.  Just finding a public bathroom was hard enough. Getting to it with a wheelchair was a challenge.  Ramps here go partway.  Ramps there go partway.  There are elevators that only go to certain floors.  Having never negotiated this mall alone,  I found trying to do it with a wheelchair daunting.  I was frustrated to say the least. Then I finally get in the bathroom to find three stalls and a sink, and zero extra room. The handicapped stall was an insult.  Not even big enough for Lizzie’s chair alone,  and no hope for getting the door shut for privacy at all. I apologized to Miss Lizzie for extending her wait and immediately left the bathroom.  A lady who saw us going in a moment before asked with concern,  “It’s not working?” I said,  “Not for us.” Bearing down on Lizzie’s chair, I tried to find another bathroom.

I decided if the public mall washroom was that bad, maybe I would try a department store. We went to the closest which was JC Penney’s. The Penney’s washroom was on the second floor of their store, so up in their elevator we went. We found the washroom. The entrance to the bathroom was lined on both sides with sinks that were barely far enough apart to get her chair through with no one there. If there had been someone else it would have been a traffic situation, one of us moving out of the way for the other. The bathroom had only one stall in use. The handicapped stall. So I pulled Lizzie down the hall between the stalls. I noticed there was another handicapped stall, but that one was not big enough for her chair let alone me with her. With no one else in the bathroom, we went to the end of the aisle and I pulled Lizzie’s liner diaper out the leg hole of the shorts she wears under her pants. If she is just wet, this is how we sometimes deal with the bathroom situation. She was not just wet, and now I knew we had a mess on our hands. So the person in the handicapped stall came out. She was carrying an item on a hanger, don’t know what that was about and had no time to question it. I threw open the door to that handicapped stall, and noticed there was enough room for Lizzie’s blanket on the floor. It felt like a jackpot to me.

I carry a very large picnic blanket with me for these occasions. We make do on the floor when we have to. Moving all of our bags and my wallet off of Lizzie’s chair and into the stall, I set up her blanket and her on the floor. Then I closed the door and changed her. Her on the floor me bending over and fearing that someone would take or mess with her chair which was out of my sight.

During the change, I could hear another mother come in. She was explaining to her daughter that she was three and could not fit on the changing table and that was why she should be potty trained. I wanted to tell her to try changing an 11-year-old with lady issues who can not stand to be changed, but bit my tongue. My bathroom situation was not her fault. I hoped for her sake potty training was around the corner for her daughter.

After getting Lizzie to the floor, changed and back in her chair, I felt like I had just taken an hour long aerobics class. I was thankful that at least there was enough room on the floor to change Lizzie, even though the floor should not have to be our go to move.

When we left Penney’s a few minutes later, we left by the second floor mall entrance, where immediately out the door I saw a restroom sign. I decided to go down the the hall to see what was available. I looked in the door (it was too crowded to take Lizzie in when we didn’t need it) and I saw a couch in there. I also noted a family bathroom outside of the ladies’ room. I made note where this bathroom was in case we needed it again, but with it being on the second floor and the Microsoft store on the first, it wasn’t ideal. I mean, with Lizzie in diapers is one thing, but I was thinking about those people who can actually use a toilet and would have to come all the way up here to get to one that was usable.

Michael finished his merit badge some time later. On our way out of the mall he commented that he needed to use the bathroom. Having drank a Starbucks coffee for the ride home myself, I thought he had a good idea. I told him we’d check out the bathroom before we left. This time we were in Nordstrom’s which was the store we had parked by because of the proximity to the Microsoft store inside and the proximity of the handicapped parking outside. I walked into Nordstrom’s bathroom by the Men’s suit department. I was immediately impressed by a 4 foot table mounted to the wall. I of course took advantage and changed Lizzie. I also was able to use the handicapped stall while having Lizzie’s complete chair in there with me with the door closed. Kudos to Nordstrom’s. I was thrilled. So was Lizzie who had a nice padded table and giggled the entire time I changed her. It was great for us, but I would like to say that this open changing situation often makes me think of my friends with sons and how it might not work for them.

This table was a wonderful and rare find. Sad to say that, but it’s true. One thing I truly hate about taking Lizzie anywhere is the bathroom situation. Bathrooms are horrible for disabled individuals. This needs to change. People should not have problems enjoying being out in public because they might need to use the facilities or they might have to change a diaper on someone larger than an infant. I shouldn’t have to check out the bathroom before it’s needed just so I can strategize how I can use it to accomplish what should be a simple task. It’s ridiculous. I also shouldn’t have to keep hand sanitizer on us or buy some because Lizzie can not get to a sink to wash her hands. After having been on the floor (granted on a blanket, but still), she couldn’t wash her hands!

Bathrooms for the disabled are a real problem. I’ve been having this same problem since Lizzie was 3 and too heavy/large to go on an infant changing table. That’s 9 years for us personally. And I’m sure it’s been going on since there have been public washrooms. I’m wondering when there is going to be news coverage for this problem? When are people going to be outraged that disabled people should have the ability to use any public washroom they want and that their safety and privacy in the washroom needs to be protected? Every time I hear about this transgender bathroom battle, it gets my blood pressure up. Sure they have rights, I understand that, but so do the disabled and they’ve been having restroom problems practically everywhere forever. How about rallying around them and giving them news coverage and talk show segments? How about fixing the public bathrooms so they can be used by everyone?

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My girl is starting to take off occasionally on her bike. I was pushing her like I always do and periodically throughout our travels around the circle we live on she started pedaling on her own. A couple times I even had to hurry to keep up. By next year I may be running to catch her. It does my heart good to see her improving. Of course there are still the two times she pulled her foot out of her shoe, leaving the shoe still secured in the pedal.  She was still more interested in the velcro on her foot braces occasionally than in riding. A few times she was even trying to escape the bike altogether. But when she tried to pedal,  man, she could go.

An acquaintance of ours was watching me give Lizzie her feeding the other day, and when I started to give her medication asked what I was doing.  When I told her I was giving Lizzie her medication she asked what it was for.  

“Seizures,” I told her.

“I thought she didn’t have those anymore,” is what she said.

I had to explain that while Lizzie hasn’t had any seizure activity in almost two years, it was because of the medication that she was on that she didn’t have them.   Not because she no longer has epilepsy.

“I thought you took her off of that medicine.”

I explained that while we took her off one medicine that was holding her back developmentally, we had to replace it with something else to control the seizures.  We were lucky to find a combination that works for her.  Epilepsy is a tricky thing, and it doesn’t usually just go away.

While some people, like Lizzie, find medications that stop their seizures, they can still build up a tolerance to the medications or outgrow the dose and symptoms can return.  Some people have surgery to correct the problem, and some people have a device implanted to interfere with the seizure activity.  But these are treatments, not cures.  And while some people do find relief, for some people nothing helps.

While Lizzie hasn’t had a seizure in a long time, I will never fully relax and think that she is “cured”.  With the amount of brain damage she suffered before birth from her hydrocephalus, and the brain surgeries she’s already had, I don’t doubt that she will always be at risk of another seizure.  Saying that Lizzie will never have another seizure is like me saying that I will never have pain from my rheumatoid arthritis again just because I didn’t have pain today.  It’s always a possibility.  It will always be at the back of my mind.  And we will always do what we need to so that the risk is as minimal as possible that she will have a relapse.  She may very well be on medication for the rest of her life.  But if that keeps her from having seizures, I will be thankful.

So I guess the point of this entry is that just because a person who has epilepsy hasn’t had a seizure in years, that doesn’t mean they are cured.  It could just mean that their current treatment is working for them.  As the mom of a child who suffers from epilepsy and has seen it at its worst, I have to say, thank God they found something that works for them.  And for those who haven’t, I hope that some day there is a cure or at least a treatment that works for them.

People sometime comment that we have it difficult because Lizzie is in a wheelchair, because she has a feeding tube, or because she’s still in diapers.  But let me tell you something.  The area of Lizzie’s disability that is the hardest for me has nothing to do with physical limitations or scheduled feedings or diapers.  It’s her lack of words that is the hardest.  Her inability to tell me her hopes and fears and dreams.  As a lover of books and writing, words are my greatest tool and my best weapon.  So the biggest challenge for me has always been that my daughter doesn’t have any.  And if I could change only one thing about Miss Lizzie’s situation, it wouldn’t be to make her walk or eat or even use the bathroom.  It would be to give her a voice and billions of words to express herself.

Miss Lizzie has been non-verbal since birth.  With the exception of “all done” and “Mama” she can’t really say anything.  Some of the challenges this has raised in communicating with her are probably obvious.  She can’t tell me if she’s hungry, or if she needs to be changed, and she can’t tell me where something hurts.  You learn to work on schedules and you learn to look for non-verbal clues.  A schedule can tell you when you need to feed her next and when she should be about due to be changed.  Crying and sudden changes in temperament can tell you that something is wrong or something hurts, but only an investigation will tell you where.  These are skills you hone over the years and they can be useful, but they can’t tell you everything.

Anyone who meets her will tell you Lizzie is a very happy girl and that she loves music and singing.  She has the physical skills of a toddler.  She can sit unassisted.  She can pull herself up to stand, not for long periods, but she can do it.  She can coast on furniture and walk with a walker.  She can reach over her railings to get toys, curtains, and anything outside of the bed that you don’t want her to have.  I’m ashamed to say that most of the time I think of her as a very large toddler.  Mostly for safety reasons.  But It’s easy to forget that your child is still progressing in other ways, when they’ve slowed almost to a crawl in some of their major developmental milestones.

Lizzie got her period last summer, and that should have been a screaming indicator of her growing up.  But I just took it in stride and thought, “Well, it’s new, but it’s just another problem we’ll deal with and keep rolling.”  Even that didn’t wake me up to the fact that I am not raising, as one of my friend’s says, a forever baby.  I am raising a young lady.  And this may be hard to see behind the diaper changes and formula feedings, but she is growing up.  Which brings me to my recent discovery.

My little girl has discovered boy bands.  See, in our house, most of the music is chosen by us as parents, or by her twelve-year-old brother.  Boy bands do not exist inside these walls.  Her brother hasn’t allowed it.  But, when I went to Lizzie’s open house this week, I made an interesting discovery.  Lizzie loves One Direction.  I had no idea.  I felt like a heel.  How could I not know my daughter had a favorite band?  And not only that, my daughter has a favorite boy in the band. Apparently her heart belongs to Liam.

This took me back to my days of boy bands and boy band crushes, and I realized something.  I’m missing out on a lot more than just basic communication.  I’m missing out on gossip and crushes and knowing what her interests are.  I mean, obviously if I can see she likes something, I know, but if I’m not there how do I find out?  How do I even know what her interests are if she finds them at school or with a friend?  I left that open house with a cold feeling in my heart.  I felt like I didn’t know my daughter at all.  Somewhere along the way I forgot that even though she may have physical challenges, she’s still a nine-year-old girl.  

For years, Michael has been telling me that this is lame or that cartoon is so babyish that it drives him crazy.  It never occurred to me that Lizzie might think so to.  She may like the things that nine-year-old girls like.  I need to make a better effort to explore what those things are so she doesn’t miss out and so I don’t drive her crazy making her watch baby shows and listen to the same baby songs over and over.  I mean there might be some she likes, but I need to make a better effort to check in with her on what she does and doesn’t like.

This morning, during her tube feeding, I pulled out my phone and played a YouTube video.  “That’s what makes you beautiful,” by One Direction.  Do you know that this was the first morning that Lizzie held absolutely still during a gravity feed.  And that she wasn’t making me constantly readjust her tube while she did the Curly Shuffle and climbed the walls of her bed.  She laid there completely quiet, a feat for Miss Lizzie for sure, and stared wide-eyed at the little screen.  Occasionally looking at me as if to say, “Mom, how did you know?”

I love my girl.  I’m making a conscious effort to be more aware of what is going on around us and in the world of nine-year-old girls.  And for now I’m going to enjoy getting to know her better.  🙂

I try to read to Lizzie every night.  Some nights we don’t make it, but we do try.  Last night I was going through our most recent stack of library books, and picked out a title by Eric Carle.  I was very familiar with some of his other titles, but this is one I had never read before.  It was called, “The Very Quiet Cricket.”  And it really had a much deeper meaning for us.  [Warning:  Spoilers to follow]

See, the cricket in the book is much like our Lizzie.  He is eager to greet everyone he meets, however, when he rubs his wings together, nothing happens.  On each page he meets a different bug, and each time they greet the cricket and he tries to say “Hello,” but he can’t.  As I read something happened that surprised me.  My daughter, who usually yells through stories, or tries to eat the book, got very quiet and just looked at the pictures.  Each time that little cricket tried to say hello, and his equipment failed and he couldn’t, it broke my heart.  I started to realize that I had my very own “Very Quiet Cricket”.

On the last page, the cricket meets a girl cricket who is also very quiet (because, as Mr. Carle explains in the beginning, girl crickets don’t chirp).  And he manages to finally get a sound out.  And to her it is the sweetest sound she’s ever heard.  I almost cried.

As I closed the book, I looked at my beautiful girl, and I stroked her cheek.  I told her that she reminded me of that cricket, and how I knew that she, too wanted to communicate, but that she couldn’t and how frustrating that must be for her.  I tickled her under the chin, and told her that like that cricket, when she did manage to get out a “Mama” or an “All done” it was the sweetest sound that this mom ever heard.  My girl giggled.  And then she looked at me and smiled, “Ma”, she said.

Lizzie is 9-years-old today.  A couple of exciting things happened this year.  First we said goodbye to a really scary diagnosis.  It turns out that Lizzie’s aortic valve has three parts as it should, not two like they thought.  So bye-bye bicuspid aortic valve!  That was wonderful.  We also said good-bye to phenobarbital.  This was a medication that was holding Lizzie back with her progress. Lizzie is 19 months today with no seizures.  She is still on the Topamax and Keppra, and we see her neurologist tomorrow.

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In addition to everything on her list last year, Lizzie can:

Pedal a short distance unassisted on her tricycle.

Walk with her gait trainer from one end of her school to the other, participate in a half-hour of gym and walk back.

Empty the top drawer of her dresser from standing in her bed.

Tolerate her iPad long enough to draw a kaleidoscope picture.

Her ability to keep food in her mouth seems to have improved, and her swallowing also.

Upcoming for Lizzie:

A swallow study is being scheduled, and based on the results her therapists will decide if it is safe to work on feeding at school.

 

Always progress, and as she continues to grow I am anticipating more exciting things to come.  Happy birthday, baby girl!  I am so proud of you.

 

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Anyone who knows Miss Lizzie knows that footwear is barely tolerated. Today she left her knee socks on, and I was wondering if that was because they were new. They stayed on about twenty minutes even with me asking if she needed help with them. I put my hand on her pants leg to access the socks and she pulled away. Okay, it thought, the socks are staying on today. Wonder of all wonders. Then the Sesame Street guys started singing from the TV, “Set Those Piggies Free”. Apparently a song about going barefoot. Miss Lizzie reaches down and in one smooth move yanks her sock off. Then sock #2 suffers the same fate. She didn’t even need help getting them over her heels. Apparently, she just needed the invite of a catchy tune.

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