Archives for posts with tag: Vacation

FullSizeRenderI was having trouble starting this Christmas letter until I got on my phone and scrolled back through the pictures I’ve taken over the last year. I’ve taken so many pictures – a full year of little moments, big things, memories that make me laugh, and memories that make me tear up.

Graham’s love of sunglasses and selfies is in there. There are pictures of donuts and legos. There are pictures of his last days at Childserve’s Daycare where he was loved well for over five years. There are pictures of his first day of kindergarten.   There are pictures of him at taekwondo. I even have a screenshot of directions for tying a taekwondo belt.

Grace is also a fan of the selfie – but most times I’m in the picture with her to help her take the shot. There are so many pictures of Grace dancing. There are pictures of her swinging. Pictures in waiting rooms and doctor’s offices abound. There’s her first day of 5th-grade picture. I had her in a shirt that in pink shiny lettering said “This girl can” for that day. There are also a few shots of her in her “Nevertheless She Persisted” shirt. Finally, there are lots of shots of baseball. Her last game she played with either Kevin or I holding an umbrella over her head because it was raining – but she played anyway.

Kevin appears in pictures of baking with Graham, snuggling with either kid, flying kites at Johnston’s Kite Festival, sitting behind the steering wheel of the van, and across the table from me when we have had a chance to go to dinner just the two of us.

I’m usually paired with Grace or Graham in the pictures of me. There are a few from work. There are a few early morning shots that Graham took – that even though I don’t like I just can’t bring myself to delete.

What strikes me most in reviewing the pictures is that we really did life this year as a family. We went to Disneyworld-which was Amazing! (I have a crazy number of pictures from those days.) We also accomplished many of our summer bucket list items. We saw fireworks at the Golden Castle (that’s what Graham calls the state capitol building) for the Fourth of July. We had lemonade at Farmer’s Day. We went miniature golfing. We went to the Pappajohn Sculpture Park. We went to the zoo. We were at the State Fair. We went to family camp. We went on a vacation to Duluth Minnesota. We went to Reiman Gardens. We swung in the backyard and had one officially documented picnic. We stayed in a hotel or two. This fall we were at Living History Farms, we had family pictures taken, and we went to see Disney on Ice.

What all that tells me is that we are finding some balance between feeling limited and just going for it. We are keeping Grace both in the world and in activities that allow her to excel that are more specialized. I can see that Graham had 1:1 time with me – and I know that he did with Kevin. The two of them take Saturday morning trips to the Farmer’s Market that are well documented on Kevin’s phone.

I can also see our kids grow, which is ultimately their job.

We plan to spend the holiday season celebrating together – with a few movies, some cousins, some legos, and Disney princess dolls thrown in. I’m sure I’ll take lots of pictures.

Thanks to those of you who check in on us. Those of you who laugh and cry with us. We appreciate you.

From all of us to you – Merry Christmas!

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_4151We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light.  (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping friends, and Thomas the Train.

He was delighted to stay in the hotel that first night. He had a whole bed all to himself.   He swam in the hotel pool. Pizza was delivered to our room. Disney Jr. was on TV.

Grace was happy to be out of the car.

Grace had three appointments over two days. First, we followed up with the plastic surgeon about her eyes. All looks good. The swelling could last a few more months. We have one more appointment with the surgeon in January. After that, we will continue to watch her eyes with the eye doctor. If we see drooping again we go back to the plastic surgeon. Graham sat on my lap for the appointment. He played on the iPad at times putting his hand on my cheek and pointing my head down to see what he was doing.

After that, we went to Culver’s for lunch. One thing that’s different about Minnesota with Graham than without is our food choices.   When Graham is with us we frequent restaurants that serve chicken nuggets, chicken strips, pizza, or pancakes.   At this particular Culver’s we were able to watch the trains (the light rail) go by.   Graham led us straight to the tables by the big windows so we wouldn’t miss a single one.

We got to the second appointment. This one was with Grace’s urologist. The appointment has several steps; first an x-ray, then an ultrasound, then height and weight, then the doctor. Here’s where we had trouble. Grace needed to be cathed, needed meds, and needed food all at the same time. Graham wanted to be playing in the kid area on the other end of a large waiting room. That left one of us trying to get to all of Grace’s needs. We travel with a green bag full of Grace essentials. We put it on the back of her wheelchair. Things are organized and sorted into baggies. We need water – hot water for meds and some at room temp to keep her hydrated. There are gloves, lubricant, catheters, and wipes. Medicine, medicine crusher, syringes, and tubes are all in there too. Then the box of formula – that sometimes, depending on how you open it, drips a small amount of sticky white liquid on your hand, or the tube, but you are powerless to do anything about it because if you let go those few drops could become a lot more.

Graham was sure we were done after each step of the appointment. Because we were trying to meet both their needs we ended up feeding Grace as we talked to the doctor’s nurse and then the doctor. When we were with the doctor Graham did excellent. The doctor told us Grace will need a surgical revision of her mitrofanoff. This is not an immediate need. We have some tricks we can try to buy us some more time. Neither the doctor, Kevin, or I want her to be in surgery anytime soon.

Once we were done Graham was so excited. The Lego store at the Mall of America was next. But then we had to wait some more to schedule Grace’s follow up appointments.

All that done we left the hospital, went down the circular parking ramp, where Graham went “whee” and declared that he loved driving in circles. We were ready for his part of the trip.

He’d told us when we planned the trip that he definitely wanted to go the Lego store. It turned out he wanted to go to no other stores.   Lego store was done he was ready for his next objective. A train ride.

Grace was done being in her wheelchair.

img_4149After the train ride where Graham got to go under the airport on the light rail it was back to the hotel. He ate some pizza, played with his Legos, and went swimming in the hotel pool. He fell asleep in another big bed – all for him- watching TV.

We went to the breakfast buffet in the morning. He chose Cheerios. We talked with a few girls eating their breakfast. Graham and one of the girls had a jumping contest to see who could jump highest.

We packed up to head to Choo Choo Bob’s – Graham’s final objective. As we left the hotel room he made Kevin stay behind but led Grace and I outside to see the singing rock he and Kevin had discovered when we first got there. The singing rock is actually a fake rock with a speaker in it.   He was so excited to show it to us. He did a little tap dance as we listened to the music.

Choo Choo Bob’s was a lot of fun. We had to leave story hour after only 10 minutes to get Grace to her final appointment. Graham handled it well. Way better than is even fair to a boy at Choo Choo Bob’s. The last appointment was the eye doctor. Eye doctor appointments take at least 2 hours. Grace wasn’t being particularly cooperative. Graham actually scared the doctor when he popped out of the chair he’d been sitting in very quietly. After she’d recovered the doctor started talking about Grace’s next appointment. Graham interrupted her piping in that he didn’t think Grace should have any more doctor appointments.

Then, there were chicken nuggets for lunch with fruit punch to drink. We started driving home. Graham wanted to be home 20 minutes after we left.

img_4150I sat in the back of the minivan between the two kids as we drove home. There were moments when my shoulders held both their little heads. We’d done it. It wasn’t always pretty. Kevin and I hadn’t really unpacked any of the information we’d heard.   Having Graham there prohibits some of that.   But we’d seen a singing rock. Graham had gone under an airport. Grace doesn’t have to go back to Minnesota until January. We’d done it leaving no man behind. We’d done it together. I don’t feel like Graham should have to be with us every time, but sometimes he should be there. She’s his too.

A few months ago he’d asked me why anyone would stay in a hotel if their sister wasn’t having surgery. I tried to explain the whole concept of vacation.

Maybe he kind of got it.

I hope one day soon we can get him (and Grace) an actual vacation.

Joy

 

 

calendarTwo weeks ago I wrote an email to my boss telling her that our home health nurse was leaving and that the nursing agency had told us there’d be no one to care for Grace until at least July.  We were going to be on our own for at least two weeks.

“That’s the last thing you need Joy” came the reply.

She was the first person I’d told who hadn’t said something about how good things will come out of this.  In a way it felt like she was the first person who’d really heard what I said.

A home health nurse – a really good one anyways – is an amazing creature.  Capable of coming into your home, caring for your child, speaking for your child (in our case), doesn’t notice the dishes in the sink, and doesn’t mind that there is a little brother who needs attention too.  That nurse sees you when you are sick, knows when you are behind on laundry, and gently tells you that Grace needs more bibs or extra clothes at school.  That nurse sends you pictures now and then so you can see what Grace is up to.  That nurse never minds that you call to check in because something about Grace just wasn’t quite right the night before.  That nurse takes care of Grace with such a combination of gentleness, enthusiasm, caring, attentiveness, and love that you never question Grace is being cared for.

We are having to give that up.  There’s a loss there.

A new nurse is a new nurse.  There will be lots of things to figure out.  Someone else will need to learn all the ways a seizure can look in Grace.  Someone else will have to learn the differences in her vocalizations.  Someone else will have to learn to let her go so she can walk on her own.  Someone else will have to learn the cues Grace gives us when she’s not well.  Someone else will give her medicine, feed her, diaper her, and all that goes with that.

Selfishly there’s also a loss of vacation time that I’ve been mourning.  The only time I’ve taken off in quite awhile has been to take Grace to doctor’s appointments.  We go to Minnesota a lot for those appointments but I wouldn’t exactly call it fun or relaxing.  My hopes of a few days just to get away will have to be delayed.

And in one moment of grief I thought to myself that maybe this was the universe telling us that we can’t take care of her.

My mom and dad are coming in, saving the day in the amazing way that they do.  They have graciously worked it into their retirement (which is incredibly busy and sounds wonderful).  I hate to take them away from it.

We will make it.

A new nurse will learn.

It won’t be the same.

Graham is really struggling with the change.  He’s asked for the nurse each night.  He’s been very concerned that no one else would be able to find his favorite episode of the show “Super Why”.  He likes “the puppy one.”

The thing is the nurse knew that and before we’d be there she’d have the puppy one all ready to go on Netflix.

Such a thoughtful thing that made life easier.

Joy

Aquarium Engineer

Aquarium Engineer


I’m a little behind in blogging – but over the next few days I hope to catch you up on a few things.

Kevin and I decided this spring that we wanted to take a family vacation this summer. Shortly after that we spent a weekend with Grace in Minnesota. After hitting a museum and the Mall of America – just with Grace- our confidence about our ability to take a vacation that Grace and Graham could both enjoy – and fully benefit from was a bit shaken. Grace needed both of us. Chasing after a one year old, who hasn’t fully developed an understanding of the phrases “just a minute”, “no”, and “we need to help Grace, you stay here” and taking care of her and helping her experience things was incompatible. We needed another adult. Not just any adult would do – we needed one who could float back and forth between our kids – and who could help us just go with flow.

Grace’s ballet engineer – Jill was the perfect candidate – and she said yes!

Having her with us turned out to be a wonderful gift. She got to experience all of Grace… Grace grabbing at food in restaurants, needing to stop for diaper changes, feedings, water, and meds. Grace at an aquarium loving the fish. Grace tired and grouchy and letting us know. Pushing Grace in a wheelchair. Experiences she hasn’t had with Grace outside of dance.

She got to experience Graham too. Sesame Street. Bus watching. Elmo. Elmo. Elmo. Water (fountains to the rest of us). Him saying “hi” to everyone. (Jill is convinced he is going to run for political office).

Then there were Kevin’s and my parts of the trip – She ate BBQ, she went to the big shoe store, and watched Hallmark commercials with us at the visitor’s center.

She knew just what to do. She saw where we needed help and she helped.

At the aquarium she crawled underneath the tanks to stand Grace up so she could see. I told her I would do it – but she said not only is she a ballet engineer, she could be an aquarium engineer as well!

It takes a lot of people to keep Grace standing – to engineer her life. We are so grateful that Jill is one of them.

Joy