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file-15If my life had a soundtrack I believe the song “Everything Changes” from Waitress would be heavily featured. The first part that truly speaks to me goes like this:

“Today’s a day like any other
But I’m changed I am a mother
Oh, in an instant
And who I was has disappeared
It doesn’t matter, now you’re here
So innocent”

And a few bars later these are the words:

“Two tiny hands, a pair of eyes
An unsung melody is mine for safekeeping
And I will guard it with my life
I’d hang the moon for it to shine on her sleeping
Starting here and starting now
I can feel the heart of how

Everything changes.”

As I look back I see there are no entries in Grace’s blog since her birthday. Frankly, it’s because Grace is changing and Kevin and I are trying to keep up. Her seizures have been messing with her quality of life more than we like. She’s been considered “malnourished” for a while; I hate that label it makes me feel like a horrible mom. As she gets taller she’s been deemed further malnourished. (Ugh) Her sodium levels are still low, and the doctor leading that arm of her care is discouraged he can’t diagnose her with something that explains it. Grace’s pediatrician and I had a good chuckle over that; Grace’s pediatrician long ago realized that Grace defies explanation and he is good with that. It’s one of the reasons we love him. Grace has had so much blood and urine tested for all kinds of levels it’s unbelievable. It took two IEP meetings to get her school plan figured out. One of the lenses of her glasses kept popping out. She’s outgrown the flexible soft glasses we’ve been buying her. And there are other things I can’t write about, but I believe I’ve given you a taste.

So, we’ve changed her medicine. We went up on one and we are adding one. The medicine we are adding is called Epidiolex. It’s derived from marijuana and FDA/DEA approved. It does not contain anything that would give Grace a high. There are only 10 pharmacies in the country that have access to it. Once we had the prescription we waited about six weeks for it to actually arrive. When it did we found out there were additional steps we needed to take to make sure we had all the documentation we need to travel with it. We have her on the lowest dose right now and will gradually be increasing her dose over the next month. I’m anxious to see what it will do for her and am daring to be hopeful that she could have fewer seizures, and if not fewer seizures then easier ones for her to bounce back from. As with any new med we second-guess ourselves about whether or not we are doing the right thing. We’ve known that a cannabinoid medication has been an option for Grace for a long time…but until now it had never been legal in the form we needed it to be. Cross your fingers.

We’ve changed her formula. No more pediatric blend for Grace. She’s now getting a formula for adults made primarily from whole foods, but we don’t have to do the mixing or blending. We now have to feed her every two hours when she’s awake so she can get the calories she needs. It’s intense. We are adjusting. The flexibility we had seems gone. It’s taken time to get her to the right amount and there have been multiple calls and emails between doctors, the dietician, and home care nursing all with us as the hub in the wheel between everyone to figure this all out. The amount of formula we get from the supplier to feed Grace in a month is exactly to the drop what we need to feed her. If we spill she misses calories…No pressure. Once we see how her sodium does, and if she plumps up a bit, they’d like us to introduce some blended real foods. That could be amazing.

Kevin, master of research, found glasses. He found a place willing to get a few pairs onsite for Grace to try. We paid for the transition lenses so sunlight isn’t so bright for her. We want her to hold her head up in the world- even outside! We are anxious to see how the glasses hold up to Grace’s abuse.

Through all of these changes, Grace just keeps going. She complains at times, but I have to think if I were her I’d be complaining more. One thing that has brought me comfort through all of this is watching her sleep. We watch her at night through a video-based baby monitor. She has slept the same way since she’s been little. She curls up on her right side. She tucks her hands under her right cheek and she sleeps. When you put her on her side in bed she usually just snuggles right in. I can easily imagine her little when I watch her sleep. She’s so beautiful and I don’t see ability or disability when she sleeps, I only see Grace.

And in those moments the song plays in my head. In an instant she was ours. In an instant we got a diagnosis. There were other instants she got more diagnoses. She is innocent. Her unsung melody could easily be lost to our fear or our complacency. We can’t hang the moon but we can try our best to do whatever we can for her. We recommit everyday to Grace because she is here.

Joy

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Grace turns thirteen tomorrow.  13.

Thirteen is supposed to be the start of teenager-dom.  It’s supposed to be about navigating friendships, big emotions, limits, learning, taking steps toward independence. We should be a year away from teaching her to drive. For us though 13 will be very much like 12, 11, 10 and the years that came before those. For better or for worse Grace is Grace, and while she’s always got something going on in many ways she is the same. She’s completely dependent on us. We feed her, get her dressed, brush her teeth, comb her hair, change her diaper, crush the medicine and put it through her g-tube in the hopes of fewer seizures and leveling off the chemistry of her body that’s just not quite “right”. Much like an infant or toddler, her schedule knows some flexibility but there are always consequences if we don’t follow the schedule. We don’t have the flexibility with Grace that should come with a 13-year-old.

In some ways, it’s a miracle that she is where she is. That she is doing as well as she is. What would raising Grace look like 40+ years ago when my parents were raising me? Or what would it have looked like if she were being raised when they were? I know the world has come a crazy long way. Accessibility has. Pink helmets have. Medicine has. Education has. Technology has. But sometimes it’s not enough to know how far we’ve come. I just want more. More normalization. More kindness. More accessibility. Less isolation. More flexibility. Less jumping through hoops.

Grace’s teacher recently let us know that at Grace’s IEP meeting in a few weeks it will be Grace’s first transition meeting. To be honest I haven’t studied up on that whole thing as much as I should have. I haven’t wanted to deal with her transition to what happens after high school. You are supposed to send your kids to college, not try to find a group home, or ways to keep your child in your own home (on purpose). I don’t think I’m ready for all of that yet. She’s this beautiful girl, as I write this she sits across the room from me in princess pajamas, playing with a toy meant for a 6-month-old. I can’t even imagine what our world looks like when she’s done with high school. It feels like we are preparing for her to just drop off the face of the earth- years before it’s scheduled to happen.   Of course, Kevin and I will not let her fall off the face of the earth. And as her IEP approaches, we’ll do the paperwork and ready ourselves for the first of many conversations. What choice do we have?

I wish I was happier to celebrate her birthday but I’m not. Graham’s been pushing. He can’t understand why we wouldn’t have a party. It feels cruel to explain to him that it’s because her birthday makes me sad. He shouldn’t have to process any of that – and I’m so grateful that he’s not sad.

So at this point, my conclusion is that I need to be sad when I need to be. I have a few hours marked out on my work calendar as vacation time to just be on my own this week. Other than that I’m getting ready for her birthday and blaming her lack of a celebration on the weather and that her birthday is on a school day. I will hang up the birthday banner. Wrap the presents. Sing. Take her picture like I do every year. Send light up balloons to her special ed room at school. Invite our friends to go bowling next weekend or come over to the house for a bit. And I will celebrate her attitude. Because of all things, teenagers are supposed to have; Grace has attitude. She can be so stubborn. So persistent. So fired up. Her spark inside continues to develop against all odds. I love her more than I can ever say. And I will continue to look for ways to have her and her “tude” shine.

Joy

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

 

 

 

 

 

 

Romans 12:9

On Wednesday nights I take Grace to church. She participates in the jr. high ministry program. (Seriously…jr. high ministry…hardly seems possible).

We were there last week. Grace and I were in the front row. We were with the other kids in her special needs class and all the 6th graders.   It was “Ask the Pastor” night. We’ve been talking about the Bible and the week before kids were asked to submit questions that they had for the pastors to answer. The two pastors walked out with what looked to be a pretty substantial stack of questions. In the midst of answering questions about why there are no dinosaurs in the Bible, why God made cancer, why it’s important to go to church, how long it takes God to forgive, and where God came from, the kids in Grace’s special needs class were all over the place. One girl was up out of her seat multiple times. I could hear the volunteer behind me encouraging the boy next to him to stay seated and quiet. One volunteer jumped from kid to kid helping where she was needed. The sign language interpreter just kept signing. We were disruptive.  I kept waiting for someone to walk one of the kids out of the sanctuary.  I watched for glaring looks or raised eyebrows to come from the pastors answering those 6th grader questions – but none of that happened.  Our class was exactly who we are. During communion, Grace added to the disruption in her own way.  Pulling away from me at times to walk towards the band as they played, the pull of the guitar, the lights, and the patterns behind the power point slide showing the lyrics all drawing her away from our seats.

Frankly, it felt unreal and I continued to wait for the shoe to drop. Would our class leave early? Was there an alternate route for Grace’s wheelchair if I had to get out of there quickly?   I panicked a bit when I realized there wasn’t. We were blocked in.  We would have to leave through the crowd and out the main doors. We were part of the group for better or for worse. But my worrying was for nothing.   We stayed and continued to just be us. We were there the whole time and then after a prayer made our way to our classroom for our own lesson.

I told Kevin about it when we got home. I still think about it. It was this glimpse of how all are welcome…eerily accompanied by the pastors answering questions that pointed to everyone being loved and that everyone has a place and a purpose.

The first memory verse of Grace’s junior high ministry years is from Romans 12:9. It starts like this…”Don’t just pretend to love others. Really love them.”

That really uncomfortable (for me) 35 minutes felt like real love. Real love that I can’t explain.

I have so many questions about disabilities and the church. It’s one of those areas that Grace has pushed us into just because she’s Grace. Just like learning how to give a shot or replace a g-tube it’s a competency area I gave no thought to prior to Grace’s diagnosis. But once you learn something new you can’t help but see it.

As I walked through our church on Sunday morning I saw multiple kids with disabilities. There were volunteers sitting with them in nooks and crannies. Volunteers dancing with a partner where there was no music. A volunteer in a hallway carefully holding a hand and walking slowly while chatting about nothing I could overhear. I wondered if other people saw them?  Do the people that work and go to this church know what that group of volunteers is doing for those kids and their families?  Do they know how welcoming it is that when you get to church and find the handicapped seats are all taken but the congregation is so quick about making room the ushers don’t even have to intervene? Do they know that with the few days they give me to prep I can make most any lesson adaptable for Grace and I’m happy to do it?  Do they know what it means when they can admit upfront they aren’t perfect but they are willing to work with you?  I wonder.

Someday I want to have something profound to say about disabilities and the church. In the meantime, I’ll keep watching.

Joy

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