Thursday, October 12, 2017

I LOVE LISTS... or, what we've been up to

I woke up this morning and had to write. And it had to be a list. Why? Because there's been too much going on and, well, I love lists. In no particular order:

1) I blinked and he started second grade.

Jack is still so excited to get up in the morning for school. Sometimes he'll hang out by the door for an hour asking to "please take me to school already!" He loves his classmates. He is growing and developing at his own, Jack-pace. I love seeing his little school community and the place where he feels so safe and comfortable. Now, who knows what he's up to for 7 full hours, but he must like most of it. He goes in and out of the mainstream classroom and spends a lot of time in the resource room. My favorite part of the day is picking him up. I love to see his big smile and pray he always loves school this much.

2) The new Jackpants book was published! Thanks to all the book sponsors and those who purchased individual books.

A really fun day was reading the new book to Jack's classmates. They loved the storyline and I think really understood the beautiful message. Because of the generosity of our sponsors, each child in the second grade got to take their own copy home. After reading, Jon opened it up for a little Q and A and you guys, it is my favorite thing in the world. Kids are hilarious. This time around they were really interested in how Jon comes up with his stories, how he illustrates them, and how publishing works. Last year they were more interested in Jack and why he is the way he is. But this year is such a testament to these books and what being classmates and friends does for the kids understanding of disabilities. They all know Jack now. They understand him, that he is disabled, and that's just who he is! The power of these books and the message they share have made such an impact.

3) I've written about preemie teeth so many times. Long story short, because of NICU medications and interventions, a lot of preemies have dental issues. For Jack, this has manifested in pretty bad oral aversion, being very afraid of the dentist, and not letting us get a good look at his teeth. So yesterday we did what many of you have done. Jack went under general anesthesia for a deep teeth cleaning that gave his pediatric dentist the opportunity to check out his teeth closely. Besides emerging out of surgery with sparkly (like a diamond, ya'll) teeth, he also had some baby teeth yanked. AND TO OUR SURPRISE, the dentist saw some pretty fantastic, strong teeth. No cavities or decay. Who knows how this happened, but we'll take it. Gosh, the things we do for our preemies. How is it normal to be at the hospital so much? That's just our life. Sorry for scaring my insta friends by posting a hospital picture. I forget that our life is pretty strange and I didn't give enough info! HE'S FINE. HIS TEETH ARE LIKE SPARKLY DIAMONDS.

4) Another big deal in Jack's life came in the form of some fancy new AFOs (ankle foot orthotics). Let me just tell you - he HATES the casting process. This is when he has to sit extremely still while they plaster up his feet to get perfect measurements. We travel 3 hours for this appointment. Those measurements are then sent to the AFO factory (or something like that) and perfect new AFO's emerge. We drive back and pick them up!

We always go with boring white for Jack's AFO's. I know there are super fun patterns and designs, but Jack doesn't seem to care. So we get them to match his white socks. Are we boring? I think that means we're boring.

5) I guess I should tell you! Something clicked around August and Jack decided that he remembered how to walk. It's been almost two years since his debilitating hip surgery and one day this August, he just decided to walk by himself out of his bedroom. Yes, I did have a minor heart attack seeing him emerge from his room, suddenly standing up and walking, but since that day he's walked unassisted everywhere. I have no clue what clicked, but I knew surgery and recovery would be long. I did not expect it to take almost two years, though. Much like walking independently the first time around, he just decided he was confident enough to do it. So many things for Jack are him deciding, on his own timeline, that he is ready. Sure, he does physical therapy, works really hard, and even when his body is physically ready, it usually it boils down to this: Jack has to make up his mind that he can do it.

5) ABLE Montana! You guys. After three years of really hard work, Montanans can now open their own ABLE Accounts. This is something Jon has been working on during his free time and we are so happy to share that this new opportunity is finally available. To celebrate we cashed in Jack's piggy bank to put in his very own ABLE account.

Montanans with disabilities can now save money without affecting their eligibility for benefits. This is such a big deal for families like ours.

6) Jack really likes jumping and bouncing around on the bed. He's also pretty uncoordinated. That perfect mix resulted in the most epic flip out of the bed and a black eye that made Jack look like he came straight out of a bar brawl. I thought it was cute. There's something about typical childhood experiences that remind me my kid is still just a kid. He gets black eyes like the rest of them and he didn't even have to go to the hospital!

7) I'm pleased to announce that, FINALLY, we seem to have found the magic to help Jack gain weight. In the past few months he's gained 4 pounds. For a kid whose weight was stuck for years, this is a big deal. I'm here to tell you that we owe his weight gain to one thing: his g-tube. Yep, the tube we all love to hate. The tube that has saved his life so many times. That darn tube that we have fought with and agonized over for so long. Jack is now 100% tube fed and that has helped him gain weight. I don't know if he'll ever be a by-mouth eater again. But I know he's gaining weight and that's a big deal. I also have to shout out Real Foods blends for being key to this tubie diet. FOUR POUNDS!!!!!!!

8) And finally, this. Because Baby Jack still has my entire heart.

P.S. I don't write here as much these days. Why? Because, like, I'm on Instagram every day. WHY DON'T WE FOLLOW EACH OTHER YET?? (it's private because of creepers, but I love following all you non-creepers out there)

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Wednesday, August 16, 2017

Jackpants and the Sleeping Giant

We are so excited to announce...

The Adventures of Jackpants continue!

Just in time for the new school year, this fourth book in the series will be published the fall of 2017, just a few weeks from now.

In a nod to the old tale about "Jack and the Beanstalk," this book draws from a local landmark in the Helena, MT area called "The Sleeping Giant." Many of the characters from the previous books make a cameo, but the real star of this book is a new girl named Abby. She uses a wheelchair to get around, but one of her abilities is what saves the day. Like all the other Jackpants stories, kids are left with a meaningful lesson that will help them better understand some of their peers with disabilities.

We know that these stories have had a big impact on how children understand Jack's disabilities and these books have helped include him in the classroom. We want to continue to send that important message as Jack returns to school this fall. But this is not just about Jack. We know that many other kids have enjoyed these books and learned valuable lessons, many using these stories in their own schools and communities. We are so happy to keep the fun going!

You can order directly from this link, choosing the first option for $15, and the book will be shipped directly to you!

We have used Kickstarter to help with publishing each of the four books, because it allows people to order this new book directly, order all 4 Jackpants books, or become a sponsor of the project, if one feels led. Sponsors help get the book into the hands of each child in Jack's class, as well as classrooms around the state. THANK YOU to our rockstar sponsors!!

It's so much fun watching this process unfold from Jon's words and illustrations, to a book in your hands...

You guys, I love this book so much. Its message is so needed in the world right now. I can't wait for you to have it and for your kids to read it.
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Thursday, June 15, 2017

An Ode to First Grade

I've tried to put my thoughts and feelings to words all week, but as is typical of my writing here, I am resigned to the fact that I will just try, no matter how clumsily.

I want to write about Jack's first grade year that came to a close last week. I want to tell you about a kid who until 1st grade, had never gone to school for more than 2 hour increments. A kid who never ate a meal at school because of that darn tube. A kid who no one thought was ready, but who proved everyone wrong.

This is a reccurring theme in his life. Jack is on his own journey, why should I keep on being surprised?

It's no exaggeration to say our lives all changed for the better last August. Jack was welcomed and included into a classroom of his peers and I was suddenly with an extra seven hours on my hands each day.

That is not to say Jack did not have help in his transition. He was paired with about the most gifted para professional we have encountered and he still had lots of time when needed in the resource classroom. It's just that this year we felt (and it was shown), how welcome he was in the first grade classroom. 

This is the way it should always be. This is what the research points to. This is what was best for Jack, no doubt.

I'm here to say that first grade was a dream come true. I don't use that phrase lightly, because it really felt like a dream, a pie in the sky, a shot in the dark, that this whole school thing would work for Jack. It felt daunting to teach someone else how to tube feed, to take a non-verbal child and drop him off for the entire day, to trust that everyone was on the same page. Of course there were growing pains, but this year was a resounding success.

And you know what we do around these parts? We take the good and run with it (or in Jack's case, adaptive bike with it).

So long first grade. You set the dream foundation for Jack and although we're all a little melancholy around here that it had to come to an end, we hope and pray 2nd grade knocks us off our socks.
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Wednesday, May 24, 2017

This is 8.

Our baby turned 8 years old on the 15th. And much like on the day he was born, we woke up to a beautiful sunshiny day. His birthday fell on a Monday and heck if there is something he likes more than going to school. So off he went, doing his normal Monday routine. We waited for the weekend to celebrate properly with a some swimming.

It's hard to describe my emotions on his birthday. I have tried before, but nothing I've written quite captures the intersection of memories, joy and pain, the relief, the tenderness of the day. So I decided to take out my camera and capture his sweet 8 year old self.

This is a typical Jack smile. It's a little crooked and you can see how his cerebral palsy shows on his face. And it is so beautiful. His grin is one of my most favorite things to see.

Jack has places to go and things to do, but he still needs my help to get around. I spend a large portion of my day attached to him like this. My hand steadies him as he takes his steps and we go on whatever adventure awaits.

We have this thing together in the morning where he gets up on our bed, has us open the blinds in our room so he has a view, and we spend a few quiet minutes together before the rush of getting ready for school and work. Occasionally he'll snuggle back into bed for a few minutes. More often than not though, he likes to jump around as the morning light comes in.  He's always been our (very) early riser and as much as continuous early mornings can be so exhausting, it's also the time of day where Jack is most himself and ready to face the world.

There's just something about Jack in a collared shirt (swoon) and thanks to the best hand-me-down wardrobe around, Jack has lots of choices of collared shirts to choose from. My favorite outfit, which was first given to us at my baby shower is called "Montana Attorney" or just plain "Daddy" which is a collared shirt and khakis. Anyway, this seemed like a good "I'm 8 years old today" look. Plus, with him working on his pipes all the time, he really nailed the look ;)

 Ah this kid.

All the heart-eye emojis.

8 years old. Each year that passes I feel like we get more in a groove with the unique and not-very-average family we are. Of course I still worry about Jack's health and the future, but not so much about life with disability. I find myself listening more to the disabled community and trying to navigate as best we can, given we will be Jack's advocates navigating this world for the rest of his life. And yes, birthdays are bittersweet because they are a very real reminder that the entire trajectory of our lives changed and not in the typical ways of parenthood, but more so, in ways that I am still grappling with today. That might be a different topic for a different post, but part of what I've always done with this space is be honest with you about the journey. Birthdays are bittersweet and complex and maybe (probably) they always will be.

One thing I've learned is to not beat myself up for these complex emotions that go along with parenting Jack. I had the opportunity a couple weeks ago to do something I've always dreamed of - YOU GUYS, I got to meet my BPMFF (best preemie mom friend forever) IN REAL LIFE. Lindsay and I have been friends through the internet for five years and when I told her I would be in Charleston, S.C. she immediately said she would drive down and spend a day with me. We had lunch and got pralines and then talked for hours by the roof top pool of our hotel. It was one of those experiences where I could say anything, ANYTHING about Jack and parenting and medical this or that and she understood. I've never experienced that before because, well, I live in Montana and this whole 23 weeker life and not "growing out of it" is not too common in these parts. My lifeline has been this space and online community. But real life, in person? What a dream come true.

So May has been quite the month. An 8 year old. A day with a friend who understands. And now summer... the months I both dread and look forward to the most. Anyone else out there have a kid who really, really misses school and their routine in the summer? We have already been making lists and planning the crap out of this summer so our sweetie does OK. We can do it, right?!
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