Archives for posts with tag: bus

IMG-0121Grace and Kevin entered the empty waiting bus for the State Fair first.  Graham and I followed.  The bus driver had everyone else wait while he and Kevin made sure Grace was all fastened down for the ride. Graham chose seats for he and I.  He chose the bench right by the accordion on the double bus.  We were all settled when the rest of the people filed in and eventually the bus took off.  There were three people across the aisle from Graham and I.  I can only guess a mom, dad, and college-aged daughter. Two of three wore Iowa State shirts, the other a shirt with the American flag.  They all wore Nike shoes that had seen better days.  I noticed the man’s gaze settle on Grace.  “I’m surprised someone would go to all the work to bring her out here,” the man said.  He was looking right at Grace as he said it.  I leaned forward but looked down.  His wife didn’t say anything immediately but then she said “Maybe they just take her to a few things”.  After a pause he spoke again saying “Maybe they get more out of things then I know.”

If the two of them said any more I missed it.  I missed it because Graham was psyched to see the accordion of the bus expand and there were trains – so many trains below.

The conversation has haunted me in a way.  I wonder if I should have inserted myself? But what would I have said?

First, I’d like to think I’d say thank you for noticing the work we do.  It is work to do things with Grace.  There’s a level of planning for her that we don’t worry about with Graham.  There are things she has to have, and not just things we can pick up somewhere on the fairgrounds if we forget.  There are the hills we get to push her up. There’s the trying to find a space in a crowd of people for a girl in a wheelchair to be up front and see what you want her to see.  The crowd just doesn’t split when a wheelchair draws near.

Then I’d have confirmed we do take her to a few things we know she loves.  The DNR building has the fish.  We saw dancing at the Bill Riley talent show.  We hung out with Abby Brown at the PBS booth for just a few minutes.  There was music everywhere.  We ran into one of our favorite people, Hannah.  Plus she was just outside.  It’s summer.  Kids should be outside.  She also endures the things the rest of like!

As for his last comment, I don’t know what I would have said.  He’d touched on one of the great mysteries of Grace.  The amount she takes in and what she does with that input is hard to discern.  But here’s the thing, she didn’t complain.  She looked at the doll houses.  She watched the bands.  She slept a few minutes when Graham couldn’t decide what his one thing to do on the midway would be.  She watched the dancing.  She watched the people.

But there’s also this…we were there as a family.  We attended the state fair together.  Sure we split up at times because Grace can’t do the same things that Graham does.  For example, he likes to ride the skyglider.  Even if we did get Grace on there someone would still have to run her wheelchair up to the other end of the lift.  But we came together, left together, and hung out quite a bit together that day.  Family time is important.  Tradition is important.

I’m sure it would have been too much to tell him that there are also bits of grief mixed in for something seemingly just normal.  There were girls who look her age walking around the fair in groups together, no parents in sight.  There were girls her age in the talent show who I watched wondering about what could have been.  I looked at what girls Grace’s age were wearing and wondered if they would think it was strange if I asked them where they got their clothes.  I feel like Grace is in a bit of a fashion rut…out of kid sizes and the places I’ve relied on to clothe her!  (I find myself unsure where to shop for her now.  I want more than anything to keep her relevant.  She’s already got plenty, not in her favor I don’t need to set her up for anything based on how I dress her.)  Middle school looms and has me anxious for her, that’s a different blog I’m sure.  There are the looks.  The people who feel sorry for her.  The people who feel sorry for us.  The people who look away when you make eye contact.  There are the little kids who crane their necks backward to keep their eyes on her even as their parents holding their hands pull them forward.  There are families getting on the skyglider, families walking together hands linked, families who appear more nimble than ours.  The grief just lies on the edges, I’m aware of it, but on this day I could process it and keep going.

Finally, I’d say I’m grateful the man could acknowledge that he didn’t know what he didn’t know.  Some people count her out automatically with just one quick look.  I sometimes have said that it takes a special person to really see Grace.  I’m not so sure special is the right word-it’s not enough.  What I’ve learned is that it takes someone with an open mind, an open heart, and a willingness to take the time to see that matters.

It’s a bit strange to consider how many of the conversations like the one I heard that day about Grace I’ve missed as random people have encountered us.  As I finish writing I’d just encourage you to keep an open mind, and open heart, and be willing to see what you may not have experienced.





IMG_3496Today Grace was transferred off of the PICU to a general floor. While she no longer requires the care of the PICU staff it should be a good thing to celebrate but it was more of an upside down, crazy train commotion than it really seemed that it needed to be. We have found ourselves training nursing staff of Grace’s seizure types, lobbying for a seizure bed that had to be trucked in from Iowa City and working out all the kinks in medication protocols. It was far from smooth transfer to just one floor down. Thankfully both the PICU doctor and resident have personally checked on us to help smooth out the wrinkles. On the plus side, Grace now has a room that is technically a double, which is nice since Grace does not pack light.

We have a new plan worked out and if everything goes to schedule Grace will be discharged Thursday or Friday.

Graham has been a real trooper through all of this; we don’t give him enough credit. For the past two and a half weeks, his life and day-to-day routines have been thrown out the window and he just wants a regular “Mommy and Daddy Day with no hospitals or surgeries” as he puts it. We are rotating every other night at the hospital so he has contact with one of us every other night. He has requested several times to come to the hospital but in general, I think he likes Minnesota hospital stays better since it involves staying in a hotel with a pool and a shuttle bus ride to and from the hotel and hospital.

It’s interesting how Graham interprets being in a hospital, for him, there are toy rooms, books, and even an outside play areas. Today we pressed the nurse call button to request some new bedding for Grace while we were finishing up some of her cares. When a voice came over the intercom, Joy asked for some bedding and then Graham shouted out “and some cookies too!”



IMG_2676Today was Grace’s last day of second grade. When I got home from work I put her braces on her legs and took her outside to get a last day of school pic. She likes to walk more than stand still, and it was just me her and Graham so I did the best I could. I was so excited for her – so happy she was officially a third grader – she smiled at me as we talked about it.

About 45 minutes later I was unpacking what she’d brought home from school. The school supplies we had so carefully picked out at the beginning of the year were all in a sack. They came home untouched. The crayons that had looked beautiful at the beginning of the year and somehow held promise of all there was to come were not used. The markers were unopened. The pencils my dad had helped me sharpen for her – still sharp and tucked in boxes that had never been opened. The three notebooks I’d sent were there. One had been used, but just a few sheets. There were markers in pristine condition, pencil boxes without a scratch, erasers that had never erased and it just made me so sad. It’s one of those things that they don’t tell you when you are a special needs parent…what should you really bring. In past years things have been used, but second grade is more academic and evidently that means we no longer need to supply her with tools for learning. I feel a little like we have been relegated to just supplying Kleenex – because that’s the stuff that Grace uses up in a classroom.

Second grade has been really hard, for a lot of reasons I can’t speak of now. I can talk about a few things. We tried out two communication devices each for 4-6 weeks, not when we had a lot of time to invest in the trials but instead when the device was available.  Both showed us that Grace can communicate and it feels cruel to set her up to use something, see and hear her, but neither was quite what she needs- so more trials to come. More systems to learn.  More waiting to communicate. One of the devices was so heavy and large we sent it back and forth to school in an IKEA big blue bag.  This was not a small undertaking or one we could take lightly.

This year Grace was more medically complex than she has been in awhile. We had to start using a catheter to empty her bladder because she was having frequent urinary tract infections. They showed both Kevin and I how to do it in less than 10 minutes and then sent us on our way with a bag of supplies. At first it was just once a day. At first though it was very hard and very frustrating. Grace didn’t know what we were doing, we didn’t know what we were doing, and it is just not a pleasant procedure. When we were first beginning there was a Sunday morning when Grace and I had struggled to get it done. I was so frustrated with myself, with her, with the situation. We got to Sunday School that morning and we were warmly greeted by the couple who were teaching Grace’s class. I only had one foot in the classroom and I just lost it. I couldn’t bear to take my girl into that classroom with all of those beautiful children who hadn’t had to be catheterized by their mother that morning. So I told the teacher we’d be back and I took Grace back out into the hallway. Another woman saw me crying, brought me two chairs and Kleenex, but didn’t say a word. After a few minutes I calmed down, I took Grace into the room and we did Sunday School. It was a horrible point for me though. We now cath her every 4 hours while she’s awake – we are better at it, she is more patient, but it’s still not pleasant.

This year we had a hard time keeping Grace healthy – we would joke that somehow second grade was more germy.  We kept her home a whole week when she was diagnosed with the flu. We kept upping her seizure meds bit by bit because the sickness caused an increase in seizures no one liked. The epileptologist recommended we find an immunologist for Grace. We tried to find one in Iowa, but there wasn’t one who could/would take her on. So, we drove to Minnesota. They did some testing and it turns out that Grace doesn’t have a great immune system. The immunologist was amazed that she isn’t sick more. All the vaccines we have given her over the years – trying our best to protect her and care for her – part of what we learned is that many of them didn’t take. They offer her no protection because her body has no way to “grab onto” the vaccine to develop the necessary antibodies to provide her with immunity. We’ve started monthly infusions, in Minnesota, to help boost her immune system. I find myself afraid for her- for the smallest bug to get to her – all the while knowing there is no bubble for me to put her in. She has to live her life.

This year there was a new home health nurse taking care of Grace. He’s done a fantastic job running up Grace’s steep learning curve. Most weeks he is with her 5 days a week, 9 hours a day.

Grace had an aide for the first time this year at school. Two different ones actually.   They had to learn about her, and serve as her voice, and I don’t know them well, so I tried as much as I could for them to have the information they needed to be Grace’s voice.

We didn’t hear as much about peer interaction. A few names are mentioned in her communication book, but the mentions seem far apart.

In first grade she’d walked clear across the building by herself to get to her first grade classroom. For a good chunk of the first part of this year she for some reason would not walk the 10 feet into her 2nd grade classroom. This was resolved when some of the things outside the door were moved – but amazingly it took a long time to figure that out!

I struggled to understand what kids are supposed to be learning in 2nd grade, so I didn’t even feel like I could talk to Grace about it.

I have officially cried in the principal’s office now. They weren’t polite tears; they were the big ones where she had to get me Kleenex.

I’m so glad for Grace to be done with this year. For her to have a chance for something more.

There was also an envelope among her things. It was a note from the woman who buckled Grace into the bus every morning. She wrote how much she enjoyed knowing Grace and that Grace was a large part in inspiring her to go into special education. Which is wonderful. Grace’s special ed teacher is pivotal in our minds.  We go to her for counsel about a variety of things. I live in fear that she will leave the elementary school before Grace is ready to leave it. As a special ed teacher she walks this line of school politics, parent wishes, general ed teachers, and physical complex needs of her students that I wouldn’t wish on anyone. But when I hear her use her teacher voice on Grace and see Grace respond I’m so grateful that she does it. Not just for Grace but for the others in her room, and for us too.

So some good did come out of unpacking that bag. But the crayons, markers, notebooks, pencils and such are still on my dining room table, because frankly I don’t know what to do with them. They seem dirty somehow. But maybe we can make them beautiful again this summer. Find a purpose for them to help Grace grow in only the amazing way she can.


Camp YaGottaWannaLearn

I got the chance to go with Grace to one of her last days of first grade this week.  The nurse was sick and no one could cover- but after a quick scramble Kevin and I had Grace on the bus and off to school.

She had a seizure on the bus.

She kept going as I tried to wheel her into the school- trying to keep her arm from being caught in a door as it continued to jerk away from her body – a line of school professionals just watching me try to navigate the situation.  One of them joked about her not cooperating.  She just didn’t know she was seizing and I let that go.

That seizure ended.   A few minutes later another one started.  It ended.  And we were off for our day.  It was a special day – Day 2 of Camp GottaWannaLearn.    We were to spend the morning in the general ed setting rotating between the different activities.  “Have fun!” they told us as we left the special ed room.  I hoped we would – two clusters of seizures back to back left me a little anxious about how the day would go.  I wanted so badly for Grace to have fun at camp.

It was fun.  Different fun than for others I imagine.  For me it was awkward/fun.

First the awkward:    Where to put the wheelchair so it’d be out of the way? Having stilted conversation with the other mother in our group.  Trying to figure out when I could sneak away to change Grace’s diaper and get her a bolus of water.  Trying to fit her in a spot on the floor not meant for a 1st grader with leg braces (that make it hard to bend up small in criss-cross applesauce style) accompanied by her mom.  Leaving a few minutes earlier than everyone else so we’d be to the next thing on time.  Playing games that were not adapted to Grace.  Having a hard time keeping Grace’s place in line because Grace did not want to stay in line.  Holding her back because it felt like we’d be run over when switching activities.  Doing the craft project for her, helping the boy next to her, and trying to keep her from spilling beads everywhere all at the same time.

The fun:  One teacher immediately had an alternative for us.  Finger painting rather than painting with magnets above our heads.  Brilliant!    Grace loved that!  Kids complimented her on her painting.  Others wanted to work with her in small groups in another activity.   She enjoyed being around everyone and part of everything.  She paid attention to the ghost story.

I marveled at their abilities.  The abilities of “normal” first graders.  Math.  Humor.  Spontaneity.  Problem-solving.  Concentration.  Reading.

There was one point when we were lined up to play a game and Grace was paired with another girl.  She’d been in Grace’s kindergarten class.  The girls were supposed toshake hands and say “good luck” to each other before the game began.  I put out Grace’s hand – it was clean and dry- completely shakeable.  The little girl refused.  High-five?  I asked her.  She nodded.  I put up Grace’s hand.  She put her hand up – but did not touch Grace.  My heart hurt but I just kept going.  “you have to touch it” I teased gently and held Grace’s hand up again.  She did – with just a finger.  There was no “good job” shake at the end of the game.

We came back to the special ed room for lunch and meds – both a little exhausted.

We weren’t all back together yet and the 1st grade teacher wanted Grace for a class picture.  We got her put back together, and I got her down the hall where my heart again fell as I realized everyone else was wearing a camp shirt.  Grace had brought hers home the day earlier and no one had told me to send it back.  She was going to stick out- damn.  But the teacher had an extra shirt.  We put it on.  The teacher volunteered to stand by Grace and I took the picture.  Grace would not look anywhere near the camera- but she was in the picture, standing up, looking at the kids in her class!

Back in the special ed room I watched her answer questions about a book.  Work on big vs. little.  I held my breath as she walked all by herself – no one holding on from the special ed room to her 1st grade room.  It’s a long walk!  I was so proud I could have cried – but there was no break in the action for that.

Back in first grade we made a tent out of an easel and a sheet.  We read a book with a flashlight and a friend – wonderful!

And then we had guidance where we talked about careers.  The guidance counselor was telling the kids there will be more emphasis on careers each year as they grow older.  So I was forced to wonder – what career will Grace use as they progress?  What will they be told if they ask about Grace?  Will anyone ask us what career we want them to talk about for Grace?  Ugh.

Then there was music.  Grace was tired – she started to cry.  I got her out of her chair and sat on the floor – probably not on her assigned square – but I didn’t know what that was.  As we sang she calmed down.  She leaned in.  I was happy to be there to give her that rest and comfort.

It’s a lot that she does every day.

We were both pretty tired when we got home.  In fact in a lot of ways I’m still tired today.  It’s so emotional to be so surrounded with what could have been-and then to have to fight just to keep a place in line.  To recognize that it’s only going to get more complicated, and the divide wider and wider.

I tell myself I’m not going to worry about the girl who wouldn’t touch her.  Grace won’t win over everyone – no one does.  I’m going to be grateful for our princess friend and others who have found their way to seeing Grace and are happy to give her a high-five.  I’m going to be grateful for the chance to finger paint.  I’m going to be grateful that she is walking down a hall all by herself – and that she’s curious enough she’ll veer towards the bathroom just to check it out on the way.  I’m grateful that somehow there is an extra shirt and that the teacher thought of it without me having to say a word.

One day of first grade left.