Archives for the month of: January, 2019

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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

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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