Archives for posts with tag: Christmas

MK_PFTHPURPLEB1CHAR_20170227_7962999163.jpegWhen I was growing up my parents got us a Christmas ornament every year. It was a tradition. I love unpacking those ornaments each year- seeing my mom’s handwriting listing my name and the year I received the ornament on the boxes. When Kevin and I were married those were the only Christmas ornaments we had for our tree.

It’s a tradition I wanted to continue with my kids. For Grace’s first Christmas we’d been through a lot and I remember struggling to find an ornament that represented that time- something we’d want to celebrate and remember every year about baby Grace as we unpacked that ornament. Ultimately I settled on an ornament of Dumbo taking a bath in a tub. The note I wrote on the box was one sentence in length that says “Because Grace loves taking a tubby!” One year it was a Cinderella ornament that marked her invitation to a princess birthday party. The first year she rode a horse-it was a horse. The year we flew to see her Aunt Heather and Uncle Drue married in Virginia it was a plane. This Christmas it was a Rapunzel ornament that we bought her at Disney World when we visited.   Each year I write a note on the box about why we chose that ornament for the year.

My mom never wrote messages on the box about why she chose the ornament. She never had to because I know and I can tell the story. I started writing out the reasons on the ornaments we buy for our kids because I knew Grace wouldn’t be able to tell the story.

Special needs grief is a funny thing because this year as I was packing those ornaments carefully away I got to wondering if it mattered.   If anything happened to us would those ornaments really follow Grace? When she grows up and if she were to live apart from us would anyone read the notes to her? Put up the ornaments? Was I just creating more for Graham to have to go through someday?   Was it an unnecessary tradition? And in a larger sense if we are the sole keeper of Grace’s story and why she matters a few ornaments won’t begin to tell the story.

I feel different about Graham’s box. His ornaments are for him to have so that one day he can remember his growing up by going through a few ornaments that represent snapshots of what he liked and how he grew. I can picture him sharing them with his kids telling them about what Dad was like when he was little.

Ultimately Grace’s ornaments got packed in her box. I came to no conclusions other than it’s not a waste. If those ornaments are only ultimately for me then they are only ultimately for me. I chalked it up to grief sneaking up on me. Grief on a normal Sunday when we’d been to church, I was doing laundry, Grace was playing happily on the floor pulling every toy out of the basket in front of her, Graham and Kevin were out playing in the snow, and we were planning on Casey’s pizza for supper. It was grief that comes from the helplessness of not knowing. Grief because I’m not sure what to dream for Grace in the future. A grief that her experience will never be all that I dreamed for her.  And the thing is I have a level of acceptance about all of this. I do. I swear. But even with acceptance, there are moments that catch you off guard and then all you can do is take the time to acknowledge the grief, share it if you need to, process it until it’s processed and then keep going.   The ornaments are packed away but the work continues.

Joy

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screen-shot-2016-12-31-at-7-11-35-amWhen my mom and dad were here a few weeks ago I handed them their copy of our Christmas card. My Dad looked at it for a minute and then said: “Dan Wardell made the Christmas card?” I only replied with a yes and a smile.

Our card has many pictures on it this year – having time to get a family picture taken just didn’t happen.   Kevin and I ended up picking some of our favorite pictures from the year to include.

There are multiple shots of Grace dancing.  Dancing continues to be her “thing”. We are incredibly grateful for dancing!

Graham is shown at the Iowa State Fair proudly holding his peanut butter sandwich on a stick. (They custom made it for him since he doesn’t like jelly).

There are pics of Grace and Graham both from the summer camp we attended as a family – one is a beautiful picture of Grace with a big smile on her face having ridden a horse after way too much time away from horses. The second is Graham on the horse; he decided that he would give it a try after watching Grace ride. I love when having a big sister works in his favor in more of a typical way.

One of our summer bucket list items, a trip to the High Trestle Trail Bridge is featured. When we made the list we knew Grace’s medical needs would be a factor in our ability to complete it but we had no idea how much of our summer would be spent with her in the hospital. There were several things on the list we didn’t get done during summer, several that we accomplished but we had to wait until fall and a few that we will start our list for next year with.  I’m so grateful that it wasn’t worse – the trip to the bridge shows we did manage to accomplish some fun!

Grace is shown getting her new bike on the Variety Club telethon this year.   We were all on TV.   Fareway sponsored the bike and the executive who presented it to her mentioned that she perhaps could ride her bike to the new store they were building in our neighborhood.   Grace picked the color – bright orange. It’s amazing all the ways a bike can be adapted and we are tickled to be able to take her out for a ride!

There’s a picture of both Grace and Graham in their Halloween costumes. They each had the opportunity to wear their costumes a couple of times. Graham chose Ryder from Paw Patrol and was always on the lookout for fellow Paw Patrol costumes when we were out and about. Grace we chose to dress as Super Girl. We thought the costume was perfect for her – she consistently displays a strength that I can’t help but admire.

There’s Graham grinning like crazy the night he got his first bike and we went to “Old McDonald’s” (McDonald’s) to celebrate.

We made sure there was one picture of each of us. There’s a picture of Graham and Kevin the day they rode their tag-along tandem bike to the “golden castle” – the Iowa Capitol Building for those of you who don’t speak Graham. They were exhausted but so proud of themselves for doing it; a nearly 20-mile bike ride.

The picture I’m in is of Grace and I the day we had her 10-year-old pictures taken at the Botanical Center. Her turning a decade in January was a huge deal for us. Epilepsy for 10 years. Appointments for 10 years. Doctors, nurses, therapies, the grind, wear and tear, and wonder for 10 years. With everything that’s happened to her medically in the last six months, it sometimes feels as though another decade should have passed by now.

And finally, there’s the shot of Graham and Dan Wardell. Graham is a big fan of Dan Wardell from Iowa Public Television. So much so that when we taught Graham the game 20 questions on the way to Thanksgiving he had selected Dan Wardell in his mind to have us guess. Kevin and I struggled to figure out who he was thinking. Graham ended up giving us a clue that he is a man who wore a cape but not a superhero. We were so impressed that Graham had thought of him – until then the game had been focused on cousins, grandparents, and kids in his class at daycare. Graham’s brain and what it is able to capture, process, and remember makes us marvel.

Graham went to see Dan Wardell several times this year including breakfast at the zoo, the PBS kids clubhouse kick off and Dan’s birthday party hosted at the IPTV studios. The one that meant the most to Kevin and I though was when Graham attended story hour in Marshalltown so he could see Dan Wardell on his reading tour of Iowa. That day happened to be one of the many days last summer we were dropping Graham off to be with my mom and dad because something was going on with Grace and she needed our full attention. Somehow that he was seeing Dan Wardell was a distraction that Graham needed, and made us feel better as parents that we weren’t neglecting what he loves and needs as we took care of all of Grace’s needs. When I called Mom and Dad later that day to check on Graham he was still talking about what Dan Wardell had told him that morning. I was so grateful for that.

There are no pictures of Grace in the hospital or even remotely medical on the Christmas card. As we look back over the last year that’s not where we wanted to focus. We wanted to focus on the fun, the inspiration, on what makes our family run outside of medical stuff: dance, bucket lists, summer camp, Halloween and fall traditions, grinning because you have your first bike, and carrying out the end of show advice of Dan Wardell that Graham repeats. “Get outside and play, read a good book, use your imagination, and eat healthy foods.” (Graham refuses to believe that Dan Wardell includes vegetables in the healthy foods category. We will keep working on that.)

Merry Christmas and Happy New Year from us!

Kevin, Joy, Grace and Graham

IMG_8871Yesterday Kevin’s mom sent us an email about Christmas. Christmas seems so far away and I had a hard time wrapping my brain around it. That’s when I realized I have descended back into surgery mode. Surgery mode is about making it through the next few weeks.   Nothing beyond those weeks factors in. I’m planning for those weeks, preparing however I can. Surgery mode is complicated by the outside world which has given us a new nurse and a new speech therapist. ( I can’t even think about not having our old speech therapist- too many feelings). Emails from school are starting to come in – transportation, school supplies. I have more responsibility at work. And although not part of the outside world we have two kids. Graham is four, he fights bedtimes and asks questions about why dirt is black, why someone would want to hurt a policeman, and why we go to heaven twice.

I’m mourning the loss of Grace’s stomach – soon it will look different some kind of medical thing will be there. I worry about how it will look in a leotard for dance. I worry about the surgery. Will it go well? Will it not? Will there be leaking when it’s all done? Will the surgeon be having a good day or a bad day? (She’s just a human.) I worry about Grace. How will she handle it all? How will we know what she needs? I worry about Graham. How will this affect him? How do we make sure he knows we love him when his sister is taking us away from him? I worry about Kevin and I. Will we be able to juggle everything that needs to be juggled?

I’ve enjoyed our reclaimed summer. We did family vacation bible school. We had dinner with friends. We went to fireworks over the fourth. Graham is still talking about a firework that went a bit crooked and landed in a tree not far from where we were. We’ve swung outside. We all went to Farmer’s Day and rode the ferris wheel. Grace and Graham both took summer dance classes. We checked a few things like sparklers, Trainland USA, and frozen lemonade off our summer list. We did it all able to keep surgery mode at bay, I’d thought. I know now I was fooling myself a bit. In all that time we were regularly taking samples to the lab. They all came back fine. We were making new plans to be gone 3-10 days. We were also hedging our bets that it could actually happen this time.

A week from today she will have the surgery. Our last lab checked out fine. History and physical tomorrow and then technically nothing can stop us. One day at a time will get us through.   There will be moments of panic- plenty of planning- hopefully some good rest – worry- but we will make it. The world doesn’t stop – but we can carefully determine how we keep up and what we may need to let go for just a bit.

Joy

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Graham throwing a rock into the creek during a photo session, Grace furrowing her eyebrows in a disapproving way.

Our Christmas cards are making their way out into the world – there’s a link to our blog on the front. If people happen to check in after receiving our cards here’s what we want them to know about where we are at now.

Grace has been working on communication- going through more than a year’s worth of trials of devices.   The devices track her eye movement and then when she holds her eyes on the button long enough the word on the button is spoken out loud for her by the machine. All of this work on communication has shown of us more of who she is. She is thoughtful, observant, funny, and stubborn. She began treatments this year to help her immune system and she’s been for the most part pretty healthy. Her third grade year is off to a great start. Her classmates sending home little notes for her now and then that give us really great glimpses into what she experiences in school. She’s dancing and playing baseball. She’s a foot shorter than me. She’s about to be 10 – this thought floors me.

Graham is so handsome! He loves to sing and dance. He has a great imagination and loves to tell stories at the dinner table. He has such affection for people – his teachers, our neighbors, family, and friends. He is generous with gifts and sharing. His catch phrases are “actually” and “when I was a baby.”

They are both cared for by some pretty amazing people when they aren’t with us.

The two of them together can be so lovely to watch or utterly frustrating! The picture above captures them so well – I just love the look that Grace is giving Graham.

Kevin and I had a chance to get away this year. A trip to Galena, a cottage, and two days of just us – amazing!

I think we are growing into our family, figuring out who we are – one day at a time. Our Christmas will feature time with family, Jake the Pirate, Thomas the Train, a ballerina doll, a lighted bubble tube, fuzzy slippers, books, and puzzles.  Please don’t mention any of that to Grace or Graham!

We hope that each of you has a Merry Christmas! Thank you so much for looking in on us.

Joy

IMG_1969-ccI went out last weekend and tried Grace’s braces on a few pair of Converse sneakers to find the right size and then I sat down to fill out your form. I was touched that you wanted me to include her “support-site” so that an artist could get to know her better. The thought that someone would take the time to learn about her in order to paint her a pair of shoes to best match her is just incredible.

As I got to thinking about it though I realized Grace’s blog is a lot about the trials and tribulations of Grace – and most often our trying to figure out how to deal with the trials and tribulations of Grace. The blog won’t tell you some of the things about her that I celebrate.

First, let me mention her love of dance. You will read of dance, but what you won’t read is how Grace knows that it’s time for dance when we put on the leotard, skirt, and tights. She carries herself differently when all outfitted to dance. She loves sparkles on her dance outfits and will often flip sparkly skirts and tutus in her hand just to see the fabric move I think. She loves to look at herself in the mirror at dance and will often look herself straight in the eye, moving her head back and forth as if checking herself out.

To continue with the sparkle theme – Grace loves lights. She loves Christmas tree lights, and outdoor displays. She loves lights on toys. She watched the fireworks recently at 10 o’clock at night, tired as can be, but not able to look away from those lights in the sky.

Grace loves to be outside on a beautiful day. She enjoys the days where the sky is bright blue and white fluffy clouds are floating by. The days that aren’t too hot or aren’t too cold, or too windy, we put her in her swing outside (swinging is another love of hers).   On those days for as long as you’ll let her she’ll swing and never complain. She may even smile.

She loves flowers. If we happen to stop by flowers out and about she will eye those flowers and then quicker than you can imagine stick her hand out to grab them.

She loves aquariums. We take her to Minnesota for a lot of doctor’s appointments. After long days we make a point to take her to the aquarium at the Mall of America. There are so many beautiful fish there, and turtles, and we walk her to the tunnel where it seems the fish have surrounded you. She will stand in front of the fish and just watch them. Even after a hard day she’s just so content to be there. I think she’d stay there for hours if we’d let her- she doesn’t really look away and often times we find ourselves pulling at her to move on to the next thing. She loves to watch penguins swim too.

She loves music. Drums. Trumpets. Guitar. Singing. Toys that make music are her very favorite. Often times we arrive at church after the worship band has started playing and she will walk right towards the balcony to watch on our way to her classroom.

She loves finger painting. It’s an adventure, put a little paint on some paper in front of her and she will not only paint the paper, but the table, herself, her helmet, and you.

She loves the crinkle of paper – when given the chance she crinkles it all up just to hear the sound I think.

Her likes are pretty simple, but consistent. We continue to look for ways to expand on her interests and are moving into drawing apps, fish apps, and piano apps she can use on her ipad.

Finally, she loves shoes. We once got her a pair of Hello Kitty shoes with sequins and she just loved them. I put a new pair of sandals on her one night before a music concert for school and the teacher told me that Grace just kept looking at her shoes during the program. (They were pink with white polka dots). She even checks out other people’s shoes.

I am positive that she will love her Peach’s Neet Feet shoes, and we will be grateful that you have chosen to help us celebrate her in this way.

With much love,

Grace’s mom