Archives for posts with tag: school

img_8807Well, we are into 2019 and we haven’t yet written our summary of 2018. December flew by in a blur of Graham’s birthday, taekwondo, work, cub scouts, church, holidays and school. Our Christmas tree is still up for a few more days so I figure I’m good to write this.

2018 was the year:

  • We took a spring break vacation to St. Louis. The arch visitor center was under construction and I very much feared we might never find the entrance! And then when we did Graham decided there was no way he was going to go up that high. Luckily we were able to talk him into it.
  • Graham completed kindergarten and declared that he would have his very first summer vacation (because up until now he’d always had to be at daycare year round).
  • Grace completed fifth grade leaving behind a group of women in her special needs classroom who’d been there for her since kindergarten. She seems to have acclimated to middle school relatively easily thanks to spending some time there over the summer and her new special education teacher spending the time to get to know her and make sure everything was ready.
  • Kevin headed to Minnesota for an APO function and thoroughly enjoyed time with his friends and a road trip without any interruptions to stop for a bathroom or change out a movie. He listened to Bruce Springsteen all the way.
  • I invested a lot of time at work in a project that’s been happening off and on for 10ish years. I’m happy to report that the Iowa Department of Public Health is officially an accredited state health department. As the pressure on government mounts, I find myself in awe of the work that we all show up to do day after day.
  • Grace got a new wheelchair. It tilts and reclines. Functions we would never have guessed we would need. Grace picked the color “Sugarplum purple”. Of course, it sparkles and of her love of ballet seems to shine through in the name of her color choice.
  • We became the proud (but anxious) owners of a wheelchair van. The cost had always been a reason to wait…we were getting by. But Grace’s new wheelchair is much heavier than her last, and Grace hasn’t stopped growing! The wheelchair van has brought with it new challenges but also new opportunities.
  • We took the new wheelchair van and new topper (because there’s little room to pack in a wheelchair van to South Dakota). We saw the Badlands, Mount Rushmore, Crazy Horse, took a steam engine powered train ride to a small town where we panned for gold and took old time pictures, and ultimately made our way to Devil’s Tower in Wyoming because it was “so close.” It’s amazing to be able to get out in world with Grace. Not everything is handicapped accessible but we push the boundaries and I imagine as we grow more confident we’ll push them even more.
  • Kevin and I continue to serve on the Dance Without Limits Board. Our Dance Without Limits family continues to grow and the ballerinas and ballet engineer who have helped Grace over the years continue to amaze us.
  • Graham became a Tiger Cub. In his first few weeks he was in a parade and helped with a flag presentation at the Johnston High School homecoming game.   What a way to begin!
  • Grace stayed relatively healthy although there have been various concerns that have popped up through the year. Her sodium level is too low. Her urine grew some strange bacteria-twice! She had a pressure sore we couldn’t get to heal. Her seizures are changing…which is good according to the doctor (we are going with that for now).   She also outgrew the braces she wears on her legs in four months; usually braces last 9 – 12 months.
  • I have been listening to musicals on repeat…Hamilton, Waitress, and The Greatest Showman were the soundtrack of my year.
  • Kevin began collecting stickers of places we’ve been to stick on the topper as a badge of honor. His wanderlust finally getting a chance shine.

That seems like enough to get you a taste of our year. We look forward to the year ahead. Kevin has multiple summer vacations planned, we’ll have to pick one.   Graham is expressing interest not only in taekwondo but also in basketball, and he’s hinted about baseball. I’m hoping to talk him into show choir camp this summer. Grace will continue to dance and play baseball and I find myself already preparing for her 13th birthday at the end of the month. I can’t help but wonder what her version of teenager years will look like. I’m going to try and read more books and actually print out more of the pictures I take.

Thank you for looking in on our 2018. We wish you all a Happy 2019!

Joy

 

 

 

 

 

 

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When we were younger

15 years ago this month Kevin and I went on our first date at Living History Farms.

14 years ago tomorrow we were married there.

We were so young but felt a little old at the time to just be getting married…sigh.

I see our wedding picture every day and I almost don’t recognize us.

I don’t feel like we’ve looked like that since Grace was diagnosed. What I see now in our pictures are two people who look a little bit tired. Two people working so hard to keep everything afloat and smiling (but not as big) while doing it.

Never in our dating did I consider if Kevin would be a good medical supply orderer. If he’d be able to princess carry our daughter long after I couldn’t. If he’d be ok cleaning up poop.   How he’d respond when a doctor said: “Frankly, I’m at a loss…”.   If he’d have a hidden knack for adjusting a wheelchair or whipping up a changing table using IKEA bookshelves.

We had no way of knowing all of that and more was in our future.

We joke with people sometimes that we have five or six “date afternoons” a year. We’ve been getting season tickets to the Civic Center for the last several years. Somehow we’ve managed to never miss a show. We’ve been able to do that through a combination of help from family and respite providers who we are very grateful for.   When we were first married I admit I imagined there would be more date nights. But the reality of finding someone to care for Grace is that it’s hard. I sometimes get jealous of date nights and parent trips that others seem to take with such ease. I know social media is all perception but it just seems so far from our reality.

I struggle sometimes to understand the effect of Grace’s needs on our marriage. She arrived a year and a half into it and by our second year of marriage, we were playing by completely different rules. Graham changed the rules again when he arrived. I don’t mean to oversimplify but one of the big differences I see in parenting the two are the logistics Grace brings with her that Graham doesn’t.  There are so many people to schedule appointments with, people to communicate with, meetings to go to, labs to get, paperwork to fill out, things to have in a bag before we leave the house. If we forget anything for Graham we can pick it up at any Target or gas station. If we forget certain things for Grace she doesn’t eat and has to wait until we get home. Grace has forced Kevin and I to combine our brainpower and up our organization. Sometimes we have it all. Sometimes we forget things.

The other thing she’s forced is conversations I’m hoping most married couples don’t have. Brain surgery?…Yes or no? Try the experimental drug? Get the medicine from Amsterdam? Are our expectations for inclusion fair? Can we afford the wheelchair van? What will happen to her when she’s done with high school, how will she spend her day? How will she not get isolated?

I’ve been thinking about all this because we had a nurse today in our home who wasn’t with us all summer. She asked if we took any vacation this summer. I told her we did. We did Mt. Rushmore, the Badlands, Devil’s Tower. I went on to explain that the wheelchair van had made it possible. That Graham being older helps a ton. That Kevin’s research on van toppers and ability to pack in tight spaces was key. That it went well enough we are planning another summer vacation.

“Good for you,” she said.   “It was good” I replied.

This thing that the younger Kevin and I started is going ok. We are doing good things. Maybe not the things we imagined but things that are important.

I’m glad they didn’t know… the younger Kevin and I. We’ve probably done best learning together as we go.

Joy

 

 

IMG_2292National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan.   We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck.   They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other.   We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

Joy

IMG-9604This is Grace’s communication book from school. She’s had a lot of “not great” days this year. I’m glad the school tells us, but it’s hard to see. First, it makes me sad. I want her to do well. I want her to pay attention, learn, be part of the action. I want her to succeed. I want her to not cause her teachers more stress than she should.

Then I wonder what I can do about it.   She could get a “not great” related to seizures, tiredness, or unwillingness to participate.

Seizure control continues to evade us. (I don’t expect total seizure control – I expect minimal disruption from seizures). She went through a period where she was having some really hard seizures. That period seems to have passed.   But we still have some med changes to get through.   I’ve been putting off the med changes because I just don’t feel like she’s ready.  At times I feel guilty about that.  I don’t want to have her on more meds than she needs, but every time we change her meds it messes up her equilibrium. Sometimes it’s easier to stay with what you know than to take a risk that things will be worse. That’s especially true when things feel hectic.

If seizures aren’t bad enough seizures make you tired. But she’s also tired on days when she isn’t having a lot of seizures. This weekend I woke her up at 9 am. I’m 100% certain she would have kept sleeping but she had to play baseball. Is she just tired because she’s 11? Is she tired because her brain activity isn’t allowing her to rest well? Is she tired from meds? Is she tired from stress? Is she just bored? Is it something else? I don’t know.

And then there’s the whole thing about her being unwilling to participate. So then I wonder if what she’s doing is not interesting to her? Is she bored? How do we spark her energy? How much imagination does she have? There are times I delight in her attitude – it means she has spunk! “Not great” days don’t really bring out that delight.

I can’t incentivize her. I can’t punish her. I can pep talk her all I want but all she does then is look me in the eye or lean her cheek toward me to rest her head on mine.

So I’m stuck. The “not greats” tell me something but the rest of the picture is incredibly vague.

In the midst of not knowing I have to stick to what I do know. Something will become clear, but in Grace’s time, not mine. I can’t be scared to push – she needs that. I know her team is working hard. I continue to thank them and try to signal I hear what they are telling me. I update them on all things Grace I can think of.  And finally, I just have to believe that this will pass. The good and great can come again.

Joy

“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