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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Wednesday, April 26, 2017

Frequently Asked Questions, Part 2

After doing my first installment of FAQs right around this time last year and having so much fun, I've been compiling the next set of questions. In no particular order, here we go!



How's Baby Jack doing?

You guys, I LOVE getting questions about "Baby Jack". It means someone has been following our story for 8 years. When Jon started writing his hospital updates, it was all about Baby Jack.

"Baby Jack Off The Ventilator!"
"Another Surgery for Baby Jack"
"Things That Weigh 5 Pounds: Baby Jack Edition"
"Baby Jack: Our Hero"

There's been a whole lot of love given to us through the years because of our baby. And you know, he's still my baby, so I hope I still hear Baby Jack mentioned from time to time. Smile on my face with that one.

Jack's turning 8 years old soon. How are you feeling about that?

All the feels. April and May are always months where I spend a whole lot more time thinking about Jack being born so early. May 15th will forever be marked by the trauma of his birth. Ask any parent of a micro preemie - birthdays are bittersweet. But as he ages, I find myself more in a space of being thankful for each day he's with us. Peace with our situation. And just plain in awe of his spirit and quirky personality.

I've heard from parents further along in disability parenting that each new birthday brings new questions and new obstacles, so I'm not blindly going into this new year. As I come more into this role of parent and life-long caregiver, birthdays mean many different things. But, I try not to make it too complicated. We'll celebrate like we've been doing the past few years. Filling his day with all the things he loves.

How is Jack doing these days? How's his hip? Is he still on a hunger strike?

He is doing really well. We have a check up in June to make sure his hip is still healing properly (after a reconstruction, I've never heard of a hip becoming dislocated again... but Jack doesn't like following rules, so I worry). In reality, he is walking pretty much everywhere (holding someone's hand for assistance) and tentatively taking steps on his own. The difference in the length between his legs post-surgery continues to make it extra difficult to walk and I have a pity party about once a week about that fact. It's just hard to see him struggle when he worked so hard to walk as a toddler. But he's really doing well, so I can't complain much. Hip surgery and recovery is significant and it really upended a lot of Jack's life. I am so happy to see him make strides toward recovery and to hear that he spends his time at school getting to and from activities outside of the wheelchair.

A new wonderful addition to his recovery has been a stinkin' cool bike, which he is now able to pedal all by himself around the school. It's pretty great that he has another way to get some exercise (yes, kids with CP need exercise, too!) and energy out. I'll guarantee that if you take a drive by our home this summer you'll see Jack in the driveway pedaling his bike back and forth. At least that is my dream. It's the little things, people!

And the hunger strike. Yep, still striking. Still totally fed via g-tube. Still annoyed at it and thankful for that life-saving device. We have plans for a tube wean this summer. Lawd help us. I'll keep you in the loop.

Do you still have any Jackpants books? How do we order them?

Yes! We do have a few hard copies left. You can send an email to Jon (bennionjw@aol.com) if you are interested in purchasing and we will ship them to you. Otherwise, the Kindle version is always available on Amazon.

How is school going for Jack?

Somehow we lucked out on getting the best para professional for Jack and we spend most of the time pinching ourselves that she came into our life. One of the big anxieties of having an IEP and being in the special education program is wondering if your child will have a good helper. We have been lucky over the years in this regard, but there is just something so wonderful about our helper this year. She is nurturing when Jack needs it and she pushes him, too. She is creative and comes up with whole lesson plans just for Jack. Through her, Jack has realized he actually loves art and he comes home with the cutest things in his backpack that I'm now hoarding.

Jack's 1st grade teacher is welcoming and wonderful and his resource teacher is always finding new ways to get Jack more integrated in the school environment. The team is great. The administration is great. The school has opened it's doors to two different organizations that have come in and had trainings and consulting on ideas to help Jack learn. We have his annual IEP meeting on Monday and I hope to tell them these things in person.

This year we've dealt with Jack getting increasingly frustrated at his inability to communicate and lashing out, so we are all trying to figure out ways to help him. Teamwork, ya'll. Jack has a new adaptive swing on the playground which is just the icing on the cake of this great school. Jack's favorite place in the world, I think, besides his bedroom. I'm for real worried about summer when he can't go. I feel like I could write 10 paragraphs about school, but I'll leave it here.

How do you find such good pediatric specialty doctors in a rural state?

I get this question weekly. My first piece of advice is finding a good pediatrician. We called around while Jack was in the NICU and found the best in our Montana town. He then refers us to anyone and everyone we want to see. We crisscross the state frequently. We end up traveling to clinics in larger Montana towns where doctors from other states come. I can't tell you how awesome these clinics are for us. So far, we've only had to venture to Seattle Children's Hospital once for feeding issues. We know that if/when Jack's shunts malfunction, we will be on the medical transport plane to Seattle... but it's so nice to stay close to home when we can. Jack's hip surgery was done by one of the only pediatric orthopedic surgeons in our state (he practices in Bozeman) and he traveled to Missoula (our hospital of choice is Community Medical Center) to do it. We've found most of our doctors to be surprisingly flexible and willing to come where we need them.

We constantly weigh going to Seattle for a week of meeting with all Jack's specialists, but so far, have been able to keep things at bay the specialty clinic way.

You built an accessible home. That is our dream. Do you have any advice about the process?

We consider our home one of the biggest blessings of our life and we know it's a privilege not afforded to most. We did give a little virtual tour awhile back, but I don't spend much time writing about it because I know it's often hard to read about something you so desperately want and need. Accessible housing is often such a struggle. We lived for 7 years of Jack's life relying on baby gates and stuck in a space not made for him, so to be safe inside a home built for our needs brings us such a sigh of relief. I will tell you that if you are building, please send me an email (jessi@lifewithjack.com) and I would be happy to tell you what we've learned.

Do you see a therapist to talk about your PTSD or the anxiety that comes with parenting a child with chronic illness?

No, but honestly, I probably should. I would love to hear your story if you do. How did you chose your therapist? Have they helped you deal with medical trauma? Or the anxiety of caring for someone with chronic illness? What about grappling with the realization that your life will always include caregiving? These questions are big and hard and messy and full of love and guilt and I understand that it's probably healthy and worthwhile to pursue with a professional. On my to-do list.

Jack's sick. How can I help?

A couple weeks ago, Jack ended up developing scarlet fever. Yes, THE scarlet fever of late 19th century fame, accept I guess it's still around, but super rare. He had strep throat and along with that,  broke out in a horrible, hot, itchy rash.

We were pretty scared. When we didn't know what it was, I debated a million times to take him to the ER. The thing about ER's and Jack is that he will most certainly be put through what they call a "shunt workup" if he is displaying any kind of illness. We had the inclination that this was not shunt related and wanted to spare him that agony. We knew we didn't want him to go through a CT scan, blood work, etc, unnecessarily. We debated and finally took him to his pediatrician when his fever and rash weren't going anywhere. The doc looked right at him and said "I think this is scarlet fever" and 1) immediate relief it wasn't shunt malfunction (which for us means emergency flight to Seattle Children's Hospital) and 2) get this kid some antibiotics, stat!

Jack was sick. Again. This kid spends a lot of time being sick and we get the "how can I help?" question a lot. The more this happens, the more I know that it is the simplest things that make the difference and let us know you care. We had a neighbor drop off a pizza one night for dinner. A friend brought a giant coffee and donuts one morning when I was out of coffee (the horror, you guys). Another friend dropped off my favorite cookie on the doorstep and texted "left you a little treat by your front door." She didn't even ask me to open the door, just left it there, hallelujah. Food is a love language, no doubt... Or as I like to say "the ministry of food" and all the praise hands emojis.

My answer for this question is that it's often the simplest of things and mostly, just showing that you care. A text. A letter in the mail. We often don't need big gestures to understand that you have our back. For the bigger and scarier times, I think coming up with a group plan is wonderful. Someone stepping up, in-charge, the go-to, and coordinating it all. This person as contact and the other friends making sure that needs are met. A drop-off meal schedule. Someone to mow the lawn. A gas gift card. Sending flowers together.

What a privilege to be on the side of this kind of love.

I noticed now that I can't see your Instagram page. Why is it private all of a sudden?

Because creepers. But fear not. There really is a simple solution for this - just follow me! I promise I accept most all follow requests that don't look creepy. I made my page private because I kept getting spammed and more than that, I've become more aware lately of the benefits of some privacy in my social media life. Of all the avenues to connect online besides this little blog, my most favorite is Instagram. I interact the most on that platform with the people in my real life, but I've also met the stinkin' coolest people! I just needed to scale back the access.

Plus, I use Instagram for things other than Jack these days. Things like my latte or our vacation or the weather. Sounds super interesting, right?

Jessi! Have you read this book about this child who was injured and their amazing hospital story?

I'm not sure if this is unique to me, but I have a very hard time reading other trauma stories. I have a difficult time with medical heartbreak. Even following other stories on FB, I have to be careful to not get overwhelmed. I connect deeply to preemies and their stories, but I sometimes need to step away from medical stories.

You guys know this about me - I FEEL everything deeply. I'm a feeler and a crier and a lover and a hater. I have a hard time deciphering my own feelings with other parents and their grief. It all hits so close to home. It's OK to take breaks from this and to not read everything, so I may not have read that specific book.

Having said that, books can be healing and I've come across some great ones. All in moderation for me.

You don't blog much anymore. Does that mean you're saying goodbye to Life with Jack?

Truthfully, I have been thinking a lot lately about saying goodbye. I've been blogging for 8 years now. Around 2011 - 2012, I was a writing machine, posting almost daily. Millions of you have read our story and I am still blown away by that. With the natural movement of people away from blogging and with Jack getting older and wanting to respect his privacy as he comes into his own, I have been thinking of turning this space off. Who knows what will happen, but it's on my mind.

The things keeping me here? I still get emails, comments, and use our FB page and I'm still blown away by this group of amazing people. Even though I've scaled way back, there's something keeping me here. I just don't know if it's time. When it is, I'll have a party and reminisce on all the good that has come from this... most importantly, coming into contact with the best readers out there. My lifeline.

What is your address, I'd love to send Jack a letter!

I am so stoked to say we finally FINALLY have a PO Box. I always felt weird giving out our physical address, but we really heart mail so, send us a postcard! We love pen pals so much. If you've followed us for awhile, you'll know about our absolute favorite pen pal - Jack's 90 yr old friend, Grammie Katie.

PO Box 25
Clancy, MT
59634

I'll end it there. Bye friends.

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Wednesday, March 8, 2017

What A Gift

Recently, on a normal Saturday morning, dressed in our normal clothes (well, I did change out of yoga pants) we had our family photos taken. As a former professional photographer, I recommend this approach. We woke up at our normal times, I got in my normal 5 cups of coffee, we were at home not rushing around, and Jack was his relaxed Superman-missing tooth self.

Part of the reason we were so chill is that our friend, Skye, was taking our photos. She is hilarious and kind. I tell ya, give me a witty kind girl and we will be friends fast. Skye had asked us to be part of her amazing Birchtree Project which she describes as her "personal endeavor to showcase what is important each and every day... connection, kindness, gratitude, grace, joy... "

Count us in!

Here is the photo that she included in her project. As part of the project, she asked Jon and I to write the caption that would be included in the FB post, which quickly turned into an exercise of me bawling about how much I love our family.


"Our little family. I like that it’s just us three. I didn’t spend much time thinking about what my family would look like growing up. I knew I wanted to get married and maybe have children, but I was too concerned with the things I’d do and the adventures I’d go on to really dream about a family. But then I fell in love with this guy who lights up the room and had a baby who from his first miracle breath, filled me with such joy and purpose, and I knew – this little family is enough. More than enough, really. We spend a lot of time together. One, because of Jack’s disabilities and the care he requires, and two, because we are each other’s favorite people. Because of Jack, we will continue to be together, this family of three, for as long as we are each on this earth. It’s not an exaggeration to say that we are in it for the long haul and it is the privilege of my life."
~~Jessi

"I feel like we have the essential ingredient for a close family – familiarity. We all understand each other and our needs more than anyone else in the world. What I’ve learned about my own needs after getting married and having our son is that I not only have what I need, but what I’ve always wanted."
~~Jon

We were honored to be part of this project. Skye also rocked our socks off with more photos of our family, which I want to share with you. Thanks so much for these... what a gift.













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