Archives for posts with tag: normal

“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past inDSC00327 the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to.   We had him because our family didn’t feel complete – we’d always talked about having two kids.   Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him.  But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

We shall see!

Joy

 

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Around Christmas time Kevin and I decided that we were going to take Grace and Graham to Disney World. It was pricey, it was intimidating, we were experiencing much unrest about the world, but it was time for us to do something fun. We quietly planned, telling only a few people initially. In some ways, it felt irresponsible. We should have been saving those vacation hours because you never know with Grace. We should have been saving the money because you never know with politics. But truth be told we always feel like we play it safe. Our family deserved a chance to try something different.

Graham was ecstatic. Grace quietly listened to our planning knowing long before her brother that this was in the works. Oh my goodness, we planned. Kevin searched websites and mastered the Disney app. I bought a book and searched Pinterest. We borrowed suitcases from my parents.   Kevin reached out to Kamp-Rite the folks who make the tent Grace sleeps in when we travel with questions about a new compact version they have that folds up smaller. Someone there took a minute to click on the link to our blog in Kevin’s email signature. Low and behold they sent us a traveling tent as a gift. Their messages conveyed delight for our family. Their only request was that we send them a pic of us at Disney World when we returned. We were humbled and grateful and in the end sent them several pictures of our trip.

I could barely sleep the night before our trip. I was so anxious. Could we do this? Would it be fun? Could we meet both Grace and Graham’s needs?  We’d be hours away from the team that holds Grace together.

We flew out of Des Moines on a Thursday afternoon and arrived on a bus at our Disney Resort a little after 8 pm that night. We found our room, got food, and watched fireworks before we went to bed that night.

We couldn’t get going as fast as we’d wanted to our first full day there. We finally made it to the park but we were not aware of the multiple steps of security and of course got in line behind a family that just couldn’t make their tickets on their phone work. We made it to our scheduled first stop – a meet the princess with Elena and Cinderella barely on time. As we made it into the room with the two princesses we found ourselves next in line and Grace having a seizure. Kevin was so calm about it asking the family behind us to go ahead. The Disney workers were a bit taken aback by this but quickly recovered when I explained that we just wanted a little more time for Grace to get through her seizure. At some point, the doors were closed and our family – just the four of us- were in a room all by ourselves with the princesses, photographers, and their helpers. In no way did I feel rushed.  We were invited to learn magic and sing along with the music in Avalor and offered carriage rides with Cinderella and the Prince. Cinderella talked to Graham prince lessons but he wasn’t so sure about that.   There were pictures taken with each princess and pictures of all of us together.   As we exited through the Cinderella/Elena gift shop my eyes filled with tears and I wasn’t so sure that I wasn’t just going to sit down and cry. Those minutes, that interaction, somehow they had made all the worry, all the planning, worth it.   We could have gone home then and I would have raved about the experience. But I’m glad we didn’t.

Over the next four days, we did our best to take advantage of all the things we thought our kids would like. Beauty and the Beast, Finding Nemo, the Little Mermaid, Frozen, Jake the Pirate, Snow White, Sofia the First, Winnie the Pooh, Peter Pan, race cars, a safari, and the Swiss Family Robinson tree house. We visited Epcot, the Magic Kingdom, Animal Kingdom, and Hollywood Studios. Graham showed his first interest in Star Wars watching Chewbacca, Storm Troopers, and Darth Vader on stage. We had character dinners and met several of the princesses.   We watched Graham dance with Pluto. We watched Grace light up from pixie dust as we approached Tinkerbell and saw her longingly look towards Rapunzel’s hair. We all rode the Dumbo ride and It’s a Small World. We swam in the pool at the resort.  There was a single duck who frequently joined us in the pool. We rode buses, the monorail, and boats. We saw fireworks sitting on a boat out in the water.

Graham declared on a daily basis “wouldn’t in be fun if we lived at Disney?” He commonly expressed that things were awesome or amazing. Grace’s communication device didn’t work too well in the bright Florida sun, but we caught her smiling more than she normally does and had to watch her hands carefully as she encountered characters in beautiful dresses.

As with all great vacations, there have to be things that don’t go quite the way you expect. We had several mishaps where the monorail stopped working temporarily. We started joking that there is regular time, Grace time, and Disney time. We were amazed by how long we could be eating a meal waiting for the various characters to stop by. Bedtime was pretty late a few nights.

I worried about the disability/accessibility aspect of our trip. I shouldn’t have worried Disney was very accommodating. Apart from having to wait one time for the next boat, they were always ready for a wheelchair. We met other families like ours and had a few minutes to talk about wheelchairs and meds as we waited for the monorail to get fixed. There were “normal” families who went out of their way to approach Grace, help flag down a bus driver, or hold Graham’s Winnie the Pooh when it became apparent that our hands were full.   The one thing I did struggle with was the looks we sometimes got from families as we were loaded onto boats, buses, and monorails first. Yes, we were first, but we were always last getting off. I wondered to myself if they noticed that.

We’ve been home a few days now. We are back in the regular world. I miss the weather in Florida. I miss the attention to detail. I miss feeling like my primary responsibility is to just hang out with my family and experience magic.

But the thing is now I know the magic exists. I know that our family can thrive in a situation that is just about fun. The Disney magic gave us some confidence and some beautiful memories. Kevin has already begun planning our next vacation.

Joy

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!”

Kevin

 

S4300182_0089Grace turned 10 last week. We celebrated with a few presents and a cupcake for her to smoosh. There were Cheetos for her classes at school and a few lollipops for those who don’t eat Cheetos. We also sent cupcakes to the people at Target Pharmacy and to all three offices of our pediatrician. The people at the pharmacy and at the pediatrician’s do a ton for Grace – and that’s just the stuff we know about!   I’m sure that there is more that we don’t know. Despite the workload she creates they consistently have come through. They’ve been doing it for 10 years.

What Kevin and I have talked about in the leading up to Grace’s birthday has been less about her being 10 and more about how we have been dealing with epilepsy for 10 years.

Grace apart from epilepsy is a pretty cool kid. Although I can’t stack her up against a normal 10 year old, she’s her own version of 10. She definitely has things that she likes and that she doesn’t. She has personality. She has the ability to make noise. Her facial expressions are priceless. She is learning things. I take pride in her stubbornness. (She will not be messed with. She’s not a pushover.) There are people who love her. She knows what’s going on around her. She is genuine. She is funny. And when she looks me in the eye and smiles I’m pretty much just a puddle. We still snuggle each day, often times with her little hand resting on my cheek.

Just this morning she was in physical therapy doing something that’s really hard for her, at one point she took my hand for just a minute. Then she rubbed her face, a sure sign that she is a bit frustrated. After the rub she took my hand again and she began to navigate the obstacle. She is a very tough kid, which you may not see if you don’t really look.

Epilepsy has affected Grace in numerous ways. She’s never really able to be alone. There’s much that’s out of her control, her own body often times won’t do what she wants it to. There’s a randomness to epilepsy, she can be interrupted at any time. Her ability to speak for herself has been impacted. It takes her longer to learn things. It takes her longer to do things. It’s isolating. She’s completely dependent on others (and for Kevin and I the challenge of finding the right “others” is a constant concern). She never really was able to do “regular” kid things and won’t do “regular” adult things. Epilepsy makes her more vulnerable to judgements, to unkindness, and disrespect.

Epilepsy for us as her parents has introduced fear like we’ve never experienced. We too are affected by the randomness of epilepsy. There’s grief. Judgements we face.   A lack of freedom, we really can’t be spontaneous. Paperwork. Medication administration. There are never-ending big and small decisions to be made, often there is no right answer.   We are caregivers 24/7. Fear.   (I said that before but it bears repeating). Isolation.

Some days I try to picture Grace without epilepsy. I really can’t do it well or for very long. The reality of Grace being who she is (with epilepsy), and loving her right where she is at prevents me from going too far down that road.

Our girl is 10. A decade. My how far we have come!

Joy

 

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.

Joy