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 (firstname.lastname@example.org) 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 (email@example.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
I'll end it there. Bye friends.