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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Thursday, January 26, 2017

On Compassion Fatigue And Being Emotionally Available

I have started writing this post a few times, never feeling like I am quite capturing the thoughts that have been swirling around or the right tone. I'm not eloquent enough. I don't know if the right words will ever come. Many who read this are family and close friends, but I also know that many of you are parents of preemies or of a child with disabilities. You may understand what I am trying to say, no matter how clumsily.

If you're like me, your social media feeds are filled with families with the most beautiful stories. This micro preemie life, this cerebral palsy life, this non verbal life, this hydrocephalus life... it is so beautiful. We get the privilege of connecting across the miles and I get to see the much worked for milestones, the humor, the love. There is not a group of people I want to be connected to and with more. You are my people! I get to see the perspective that this life affords. I have no problem calling these kids our heroes because I know what they go through. Anyone, regardless of disability, that goes through what my child has, is a hero.

But this disability life is also filled with a lot of heartache. A lot of hospitalizations. Daily, one of our precious ones is having emergency surgery. One of our precious ones is fighting for their life. We have this daily reminder that life is fragile. It's not in the abstract. It's not a hallmark card. It's not a story you see on the nighty news or read about in a magazine. It's our reality. My heart breaks each time I see this in my feed. I've cried a whole lot of tears over children I have never met, but who are precious to me. I have tried different coping mechanisms. I pray. I grab ahold of Jack and hug him while I pray. I thank God for each breath he takes. I go into the kitchen to bake, to meditate on simple things. I get lost in a book. I meet a friend for coffee.

I wonder what more I can do, even with the miles. I wonder if the daily onslaught of this life, where kids don't make it out of the hospital, is a healthy place for anyone to reside that is desperately holding on to hope. I wonder about compassion fatigue, where I have a hard time summoning up concern for the suffering people in my own life, when I know my friend's child just died. I know suffering is not a race with winners, but my ability to care in a way that is meaningful, in a way I wish I could summon, gets dulled by this life. That's the hard truth.

I know human beings are very resilient. I know some of us can take more of this heartache than others. I know there are times when I feel more strong, where I can read another story, where I can send another email, where I can listen better. But other times I have to blanket myself to keep strength for the heartache in my own life. I have to distract myself. I have to get ready for the bad news that is sure to come. When you have a kid like Jack, there is always part of you waiting for the rug to be pulled out from under you. You try to stay healthy, to surround yourself with healthy and uplifting people, but if we are to be friends with literally anyone else on this planet, we open ourselves up to their problems, to their suffering.

I don't want to become hardened, but I know all of us need to protect our hearts so we are strong when the time comes. Likewise, I don't want to become emotionally unavailable to the people in my own life who need me.

I have no answers today. I realize this post is very stream of thought, with no easy ending, and I'm sorry about that. I am sorry this is not more uplifting. I tend to focus on the amazing and wonderful things about this life, but I also know that acknowledging this pain is important. I'm sure this is nothing new for the veterans of this life. I am still young, still so much to learn about suffering while remaining connected to others. Still so much to learn about disability parenting.

Jon and I had a hard conversation recently about Jack's life expectancy. I know many of you have had that conversation, too. How are we supposed to get up the next morning and dust ourselves off and get to work after a conversation like that? We just do it, right? But I guess I want to know what else you do?

I'll end there.
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Thursday, December 22, 2016

That Darn Hip: End of an Era (hopefully!)

Today we drove back from Missoula after Jack's recovery from the final surgery on his hip. Surgery was Tuesday morning. Maybe you've followed along on the whole Darn Hip saga, but this was a minor surgery where plates and screws were removed using the same incision from last year's doozy of a total hip (where we had a subsequent 6 horrible, stinky weeks in a body cast). Although "minor" never seems the accurate description with any surgery, anesthesia, and pain, we put it into the "Jack perspective." Comparatively, not a big one. And we are so happy this whole hip drama is over. Of all of Jack's health issues, I never thought much about the hip. Boy was the rug pulled out from under us! This has definitely been a hard year for him and my prayer is that 2017 is one filled with health. I know many of our readers are in the same boat - we just want health. Our baseline may be different from the average, but healthy for us means managing conditions, pain, growth, and no major flair ups, emergency surgeries, or general scariness. May HEALTH be in our future, yes and amen.

We had an early morning slot for Jack's surgery and still managed to spend quite a bit of time waiting for things to get going. Is there some sort of group with sway out there that wants to hear a mom complain about waiting rooms? Oh there isn't? Well, too bad! Here goes: why have us arrive at 7:30am and sit in the outer, tiny waiting room for 30 minutes? Then why have us come to the next waiting area for an additional hour when it's only in the last 5 minutes that they ask questions, have us sign the paperwork, take vitals, administer the Versed, and get the ball rolling. Is this to torment us? Is this to make sure we have adequate time to show up? I'm sure there are great reasons, but SERIOUSLY WHY????????????????????

Anyway, cute boy. Cute husband. Nervously counting the minutes until surgery.


Once they finally wheeled him off to surgery, it was less than a half an hour and done. Oh what sweet relief when we were able to head back and see a happy/agitated/confused/giggly boy. This kid has been under anesthesia too many times to count, and he does pretty well. I thought he would crash as soon as we got back to my parent's house, but he was too excited to be at Grams and Cheeks house, so No Nap Jack, who was loopy and thought he could just walk around, was the rest of our day. He did so well, though. And look what they took out of his hip! Can you imagine how good it will feel to not have that hardware in his teeny tiny body?


The next morning he woke up very sore, with all the numbing meds totally worn off. Thank God for narcotics and fun things to do like watch the same Elmo 6 times. Besides keeping Jack entertained, we also spent most of the day on my annual puzzle-around-Christmas and had lots of fun celebrating the holiday with my parents. We had a yummy Christmas dinner and presents afterward. It's just second nature to schedule most life/holiday events around Jack's surgeries and since we were in Missoula, why not do Christmas?!


I'll leave you with the photo we used on our Christmas/We've Moved card. I wish I could send one to each of our readers. Many of you have become friends. I don't write as much as I used to, but I just can't seem to let this place go. You have been such an encouragement to us, especially through 2016. And even with the rough effects of cerebral palsy (I'm looking at you, hip), we count our blessings of being able to move into this new home built for Jack's needs. So I want to wish Merry Christmas to all of you. And yes, to a healthy New Year.

All our love,

The Bennions



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