Archives for posts with tag: dance

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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GraceChangesEverythingI was up at 2:30 this morning worrying about what Kevin and I will do if insurance coverage for those with pre-existing conditions would again be denied. Or what we would do if it were to cost a zillion dollars to have bad insurance? I kid you not my anxiety around this does not go away. It just sits below the surface.

I thought about Jimmy Kimmel’s monologue about his infant son’s cardiac condition and treatment. I watched it last night holding Grace on my lap. I cried throughout. I feel for him – the grief, the horror, the vulnerability, the gratitude. The standing in a room full of people worried about your child and the utter helplessness of knowing you are the least informed person in the room. I find myself jealous of his ability to thank the nurses and doctors and therapists who were there so publicly. I would love to sing the praises of members of Grace’s team to a national audience. They are just as deserving. I started planning my speech in my head- because that’s what you do at 3am.

I thought about how Grace hasn’t complained about the first bras I’ve ever bought her. I researched so much to find something soft, comfortable, nothing to poke her, etc. etc.   They sent the bras beautifully wrapped, bright yellow ribbon tied on the outside. We opened them together. Grace chewed on the ribbon- not exactly what they had in mind I’m sure.   But I guess we had our mother/daughter moment! I wondered if her not complaining means I found the right ones?

I thought about confirmation Sunday at church just a few days ago and wondered what that will look like for Grace in 4 short years.

I wondered if I’m doing enough anywhere.

I thought about how on Saturday it had dawned on me that if Grace was a typical 11-year old I could have left her alone for a few minutes to run to the grocery store. I honestly don’t know if I’d ever thought about it before.

I wondered if we’d be able to keep Grace healthy so she can have surgery in 2 weeks. (Kevin was coughing beside me at that point). I wondered if this would be the last surgery she’d need for her mitrofanoff. I worried that my insurance through the state is only guaranteed to cover her through December, then who knows what will happen.

I went over the points of the dance recital meeting I went to last night for Graham in my head. I thought that maybe having a boy dancer is easier? I thought about how much I enjoy that he dances. I thought about how much I hate that we won’t be around for the class dance pictures.

I worried about work. I thought about grabbing my computer and sending emails right then and there. But, I didn’t want people to know I was up in the middle of the night worrying so I kept trying to go back to sleep.

I thought about how epilepsy touches everything that we do.

I thought about how we could plant a few vegetables in the back yard this summer and how that would be good for Graham.

I laughed at myself because I’ve been wishing for some time and space just to process things. Life. Grace. Graham. Work. Home. The pressure has been relentless. It shows no sign of letting up.   The 2:30 am wake up…perhaps that was the time and space I’d been hoping for.   But I’d come to no conclusions, and I didn’t really feel better, so maybe that wasn’t it.

What actually made me feel better was a sign in our kitchen I glanced early this morning. We’d picked it up at Hobby Lobby about a month or so ago. It states “Grace changes everything”. Our Grace wasn’t the original intent of the maker, and I’ll never find a “Graham changes everything” sign although it’s also true. The thing that made me smile was the unspoken words that Kevin and I exchanged when we saw the sign. We were getting it- no question. Frankly, I think it could have been horrid looking but that simple statement reflects our reality, reminds us that we are not in charge, and is just a truth we have to embrace. Fighting against it does us no good. We are left to do what we can, where we are, with love, fierceness, perseverance, and hope.

Joy

img_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

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_0007Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear.   We like him – he’s been amazing to work with. It sounds like we’ve actually been lucky. Only the culture from the ER showed MRSA, the one from Tuesday showed plain old Staph, and from Wednesday on nothing showed up. We caught it early. The seizure on Monday morning that made her fingers start turning blue was a blessing in disguise.

The good news/bad news, depending on how you want to look at – is that the infectious disease doctor is the guy we call if this happens again. The chance is real it could happen again. Sigh.

I’ve been thinking a lot about the book The Velveteen Rabbit this week as we’ve gone through all of this. There’s this scene towards the end of the book where the stuffed rabbit is old and worn and another old and worn toy explains to the rabbit that this is what it means to be real. To be made real by love. He explains that to become real happens over a long time.

I have felt really old and worn out this week.   Incapable of keeping all my stuffing inside. I also recognize it’s because of love that I feel this way. I recounted almost every day of the last week to the nurses taking care of Grace in the hospital that she had a normal birth, that we didn’t know anything was different about her until she started having seizures at about 4 ½ months. That since then we’ve been taking care of her in whatever direction she’d gone. My love for her has had to grow and change as she’s evolved to incorporate advocacy, medical skills, disappointments, risk-taking, research, wonder, and this crazy optimism that comes with special needs parenting. It’s real. Our last few months have shown me over and over how real it is.

It’s not just the love for Grace that’s made me feel that way this week. Graham has struggled. I was the one to give him the news that Grace was back in the hospital. His little face was just so sad. He told me one night this week that he hoped to wake up with germs in the morning so that I could stay with him all day. Killer.

In the midst of all of this, we have had crazy real loving moments.  Grace was complaining one night I was at the hospital with her, I unzipped all the zippers on her bed and climbed in with her. She calmed down immediately – we stayed like that for a good 45 minutes – no one came in to poke her or take her blood pressure – and when I got out to get meds going she was better. I took Graham to VanDees for his last ice cream with eyes for the year. It was chilly that night, so we were the only people there. Three people waited to take our order.   Graham was super nervous to order on his own with all of them looking at him, and so he whispered his order in my ear. Graham whispering is an experience. He puts his mouth so close to your ear you can feel his lips moving on your ear. It’s hushed, fast, so hard to understand, and it tickles. I couldn’t help but grin as he gave me his order. Luckily I know his order. Chocolate and white ice cream (twist) with m&m’s and eyes. Every time.

In the story, once you are real the rabbit learns you can never go back. The same is true with parenting once you become a parent it’s just not the same.

Grace is free to go back to all activities. We are watching her for cues that she’s ready to re-engage. Ready for therapies, school, baseball, dance, church, etc. It’s not just her cues we are watching – we are also dealing with our own readiness to put her back in the world with such a dramatic demonstration of her vulnerability fresh in our minds. Today she’s played some and rested some so far.     She is moving in the right direction. When she’s ready we will let her go back – because we love her. We really do.

Joy