Monday, February 1, 2016

Jackpants Returns!

We are so excited to announce two new adventures of Jackpants books!


Last year, Jon wrote and illustrated a children's book called "The Adventures of Jackpants!" to introduce Jack to his classmates as he started kindergarten. We knew the kids would have so many questions about Jack, and that they may come up with answers on their own if they weren't given the chance to learn more about his challenges. The book helped his classmates have a thoughtful discussion about different abilities.

But even before Jon published the first story, he felt like Jack had more stories to tell and more ways to help his classmates and all kids better understand disabilities.

Which is where we are at today. Let me tell you about the new books! The first one, "The Awesome Adventures of Jackpants!" introduces a young girl, Dakota, who notices Jack's unique mobility and speech. She learns that Jack has cerebral palsy, but that all Jack needs is a little help now and then. In a daydream, Dakota watches as C.P. Menace tries to take out the hero Jackpants with his devious tickle missiles. When Dakota steps in to help, Jackpants is able to thwart C.P. Menace's plot. Dakota's experience reinforces the lesson that we should always look for ways to help one another.

 
The second book, "The Super Duper Adventures of Jackpants!" is about a boy, Cole, who learns about Jack's feeding tube. A school aid explains to Cole that this is how Jack eats and that it makes him feel super once he's done. When Cole thinks about this more, he dreams about the hero Jackpants, who is tired after saving the day so many times. The hero is still needed, so Cole gets him to wake up and fuel up using his special g-tube so he can continue helping others in need. Back at school, Cole is able to stick up for Jack as he explains to other kids why differences we see in each other only make us more similar to one another.

 
The two new books, along with the first one, are not just fun stories for grade school kids - they are also great opportunities for parents and teachers to talk about issues like different abilities and being kind to one another. And if your child has CP or a feeding tube, these books highlight and celebrate how awesome they are - our superkids!

You can buy one book for $10, two books for $20, or get the whole series for $25. All prices include shipping in the U.S. We've made ordering easy through our Kickstarter page here. There are also opportunities to become sponsors of the book or even order them for an entire classroom. Make sure to check it out!


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Tuesday, January 19, 2016

Jack's One Level

I've switched my reading up over the past couple years. Instead of spending a lot of time on preemie blogs or post-NICU forums, I've found myself in a new place, drawn to resources about caregiving. Caregiving is a broad term, often associated with caring for an elderly family member in one's home during their final years. However, it also encompasses a small, but mighty, group of parents taking care of their children for the entirety of their lives. These are children who for whatever reason, medical or developmental, will never be able to live independent of someone caring for them on a day-to-day basis.

As each year passes, we are more aware that this will be our greatest calling in life - being caregivers to Jack. In this, it brings up an interesting set of questions to consider. Things to get in order. Wills to write. A lot of planning. A lot of trying to imagine what the future will look like and praying to God that we are strong and able to take care of him well into our old age.

I won't deny that this has been an interesting juxtaposition, watching others begin new phases of parenting their children who keep growing up, all the while preparing to continue day-to-day care of Jack for the rest of our lives. But the more I come to terms with it, the more I see how this is not something entirely unique for my parenting journey. Jack has never fit the mold, has never followed the typical timeline, and really, I know nothing different. This is our story and I love most everything about it.

Which leads me to something exciting I'm going to tell you about. Those who follow on Insta will have already seen the news, but after three years of searching for the perfect spot, we found our land and as soon as the ground thaws, we will begin construction on Jack's totally accessible, one level home.

We have known for quite awhile that our home now, with its stairs, is dangerous for Jack. He cannot walk up or down any of the stairs unassisted. And as we age, we will not be able to carry him up and down anymore. Our home right now creates barriers for Jack, a kid who already has enough barriers in his life. Our greatest desire for our future home is that Jack will have access to the entire house and will have the ability to go to any room or area he wants without risk of injury.

We don't tell you this lightly or to gloat. Yes, we are so excited, but since we purchased the land, I have been tentative in sharing because I understand building an accessible home is out of the reach for many. We fully realize that this is a dream for many of you and we don't take it lightly that we are able to build this home. But I have shared our story with you until this point, and I don't want to stop now.

As far as homes go, Jack's one level will be pretty simple. Bedrooms surrounding a central, open space consisting of a living room, kitchen, and dining area. We finalized our building plans last week and now we wait for the thaw.

I'm not sure if this will be our forever home, but it sure is feeling that way.


The funny thing about this land is that for two years we had our heart set on some property in a different area. We drove by it all the time, called it "ours", but kept waiting and waiting for it to go on the market. One day, Jon was wasting a few minutes before dropping Jack off at school and happened to take a right on a road he had never been down before. He looked over and there was this beautiful land, for sale, a minute from Jack's school. It was perfect. The icing on the cake was that the owner of the property was actually one of our favorite Montana non-profits, so we got to purchase the land with sale proceeds going directly to a great organization.


We snapped these photos on a cold, gray, and dark day, right after we signed all the paperwork. We felt warm, colorful, and bright, though. Jack's one level, coming soon!

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Tuesday, January 5, 2016

That Darn Hip: Rehab

It's been a full week since the cast was removed. I wish this hip saga was one of those stories we all long for, where we tie it up in a bow, all done with, happy ending. In setting my sight on the cast removal date, I didn't quite prepare for the aftermath. Yes, thank God the stinky, horrible cast is off, but now comes the hard work.

Jack was in an incredible amount of discomfort when the cast came off. We quickly left the doctors office and gave Jack a gentle bath at my parent's house. Once that happened, he smelled like roses and heaven, I tell ya. We had all the major pain meds and muscle relaxers on board and then we made the two hour journey home. When we arrived, Jon and I looked at each other and we knew. Jack was not going to just bounce back from this like we had hoped. Like so many of Jack's medical issues, this would be a journey (my word for a really difficult, zigzagging road that demands flexibility and allows for zero control of any timeline).

We settled into a routine much like the one immediately following surgery. A kid in lots of pain and not wanting to be touched. Goals? Make him comfortable. Pain meds. Hope he can sleep.

Last Wednesday, Jack had his first physical therapy session specifically for rehabbing his hip. We are working to regain so much of Jack's previous progress. The therapist gently stretched his left leg, worked on sitting, and Jack briefly stood on his right leg, his good side. It was then I fully realized that Jack is going to have to relearn all his milestones - sitting, standing, walking. A process that took years. My prayer is that muscle memory will help things progress much more quickly. As of right now, he can sit unassisted for about 10 seconds. No standing. Definitely no walking. That's where we are at.

I thought going back to school may be on the horizon by next week, but unless some major progress is made, Jack will not be going back on that timeline. As of today, he's missed almost two months. I'd be lying if I didn't tell you that fact is hard to swallow. Jack loves school. He was just getting into the swing of his new school and new routine. So I'm not going to downplay this. We are bummed and it's OK to be sad about these things because they mean a lot to us. I've said it before - school is a gift.

But enough about how hard this is. I want to leave this post declaring, again, that this kid is my hero.



And to show something that brightened our whole week - puppy visit!



Although I've been begging for our very own, IKEA Daisy is probably as close as we'll get right now.




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Monday, December 14, 2015

That Darn Hip: Two Weeks Left

In this situation, it is difficult not to focus on how hard things are. The reality of a body cast is that most days are spent just trying to keep Jack content. Last week was exceedingly difficult because Jack got a migraine. He was miserable. It was the worse he has felt since surgery. He was nauseous and depressed. A pretty bad combo. 

Jon and I? We are exhausted and emotionally spent. My parents, the saints that they are, continue to come each week to hang out and take care of Jack, just so I can get out of the house (i.e. therapy sessions with friends who will listen to me talk about how bad things are).

But you know what? I don't want to focus on that today. You know how hearing someone complain while you are in the NICU or the hospital or have someone dying in your life? Yeah, I don't want to be that person. Some days you just have to remind yourself how good things are. 

So that's what I'm going to do. I want to tell you that yesterday, I got to write 40-plus thank you notes to this incredible community that has rallied behind our boy. That wasn't even finishing them all. We continue to get the most thoughtful care packages and meals delivered to our door. 

I also decided that I miss photography. And I missed photographing my favorite subject. 


How can someone be this adorable in a body cast? 


 
There's my boy. Always showing me how to weather a storm 


Speaking of storms. Look at this beauty. This is Jack's view out the window from his favorite spot in the living room. 


And we have two weeks left of this cast life. We can do hard things. We have Jack's rehab lined up and plans for about a thousand baths to wash the stink away. 

Not sure if I will write before Christmas, so I wanted to wish you all a wonderful holiday. 

From Jackpants and his family to you. 


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