Wednesday, April 13, 2016

Frequently Asked Questions



I have always, always wanted to do a frequently asked questions here on Life with Jack. I don't know why it's taken me seven years, haha, but here goes! In no particular order, here are some questions that we get asked all the time.

Why did you start a blog?

It came about in the most organic way. Blogging was a big deal in 2008 and I thought "I want to do that!" I had big ideas about waxing eloquently on politics and religion and fashion and baking and... you get the idea. But what I now know, is that I started the most boring and average of blogs called The Bennions in Clancy. Even typing that now makes me laugh. It was exactly how it sounds. I never got into deep political discussions or contributed to religious thought in any way. It was just a random update-place where I would post some photos of our Christmas and what we did that week.

Everything changed when I had Jack. Jon began doing these amazing email updates from the NICU and I would post them here. Once we were discharged from the hospital, I started writing about preemie life and this place became my lifeline.

Do you ever feel like you are over-sharing you and your kid's life?

All the time. I am very cognizant that Jack has had zero say with us sharing his story so much. I didn't quite realize how much I was sharing in the beginning. Now I weigh each and every thing I put out there - every word, every photo. It is permanent. And yeah, I often cringe at things I wrote four or five years ago, because it is a snapshot to a very tumultuous time in our lives.

Having said that, I have rarely deleted an old post because as much as I have shared, I have heard from readers that our story has been helpful. I have saved thousands (even typing that sends chills) of your emails and messages about what Jack's story has meant and how it has helped you in your own preemie parenting journey. It is the main reason why I still write here.

Will Jack ever grow out of his prematurity?

Yes, we still get this question. And yes, it still is uncomfortable to answer. No, Jack will not "grow out" of his prematurity. And now that I'm a veteran preemie parent, I realize that most, if not all, micro preemies will not grow out of their prematurity. What I mean by that is there will always be some degree of residual medical concern. There will probably be developmental concern. It just comes with the territory. I used to write a lot about how Jack has overcome so much of his early birth. I still believe that. But now my tone has changed because I don't want people to be blindsided by the very real aspects of prematurity that we will live with. My mantra the past couple of years? It is what it is. Jack is who he is. Each preemie is different. And prematurity is as much of a part of him as anything else.

What does Jack learn at school?

This one makes me giggle because I swear more than half of our battle is getting Jack accustomed to even being at school. So I would say a large portion of the time Jack is just getting used to being around other kids, getting used to the school routine, getting used to following directions, and then... maybe learning something.

Everything takes Jack a long time to get used to. This is the story of his life. Right now he will sit at the table to learn for (maybe) 10 minutes and then he's ready for a break. Jack is certainly not learning math with the rest of his classmates. He is on his own course of study! A good day is one where he transitions well from activity to activity, where he is happy and connected, and where he has a little fun. I know that as he matures, he will dive deeper into "learning" and I can't wait to see it happen.

Will Jack live independently?

I don't think so. This is something we are just starting to get a grasp of, so this world is all a little new to us. We are building our one-level house right now with this in mind. A few years ago we met with our estate attorney to set up everything (there's much to consider). It's why we work so hard on things like the ABLE Act and it's behind our desire to get more and more involved in the disability community. We are new to this whole world and have a lot to learn.

What does Jack like to do?

He really likes going to school, playing with his cars, the water, playing baseball, going on walks, going on car rides, playing with daddy when he gets home from work.... and his most favorite thing of all - his movies. He has his favorites and we have been trying, desperately, to get him to broaden his entertainment horizon FOR YEARS. I know his fascination with particular movies has to do with his vision issues (CVI) and his love of routine. But my new goal in life is to not hear the same Elmo/Sesame Street/Baby Einstein on repeat. PLEASE DEAR BABY JESUS.

Will Jack ever be able to talk?

The more we learn about cerebral palsy (how it hinders motor function) and the older Jack gets, I am pretty sure he will never be a fluid speaker. He does have a small set of words that he says frequently, and he also has his own special language. He does some signing. And he has learned how to relay to us exactly what he wants. So yes, he communicates quite a bit! We think the key for Jack will probably be learning iPad communication. Now, if he would just realize the iPad is not only for playing fun games...

What is hydrocephalus and CP?

So hydrocephalus is where spinal fluid does not drain properly from the brain. It literally means "water on the brain." Lots of preemies that experience severe brain bleeds have hydrocephalus. And cerebral palsy is a blanket term for a host of motor and cognitive issues. For Jack, CP was also caused by his severe brain bleed right after birth. CP can vary in a million ways and can mild to severe. CP was such a scary word while we were in the NICU. Jack did not display many signs of CP when he was a baby. We thought that maybe we had cleared that hurdle. But then he started to not reach milestones and that is often a first indicator that something is up. Preemies are behind anyway with milestones, but CP made Jack even further behind. He made his own timeline.

When did Jack start walking?

At 31 months. And it was the most beautiful walk I've ever seen.

Why doesn't Jack eat or drink?

A combination of cerebral palsy and oral aversion is why Jack has such a hard time with food. The mouth has so many muscles and getting them to coordinate not only makes talking difficult, but makes eating and swallowing really difficult, too. And the oral trauma of having a breathing tube  while in the NICU (something that was necessary to save his life) makes Jack very protective of anything near his mouth.

I get so, so many questions about feeding. I stopped giving advice years ago because feeding therapy is certainly not a one-size-fits-all thing. In fact, it is the most complicated of Jack's therapies and since each kid is unique, I don't give feeding advice anymore. Sorry! But I get how frustrating and scary it is. There is really nothing like it. Speaking of, Jack is currently on a hunger strike. Hasn't eaten by mouth since his hip surgery. Oh the life of Jack. Thank God for his feeding tube.

Where does the name Jackpants come from?

Jack has dozens of nicknames. I think this one came because Jack kept peeing through his diaper in the NICU. This was a miracle, in and of itself, because we were hours from loosing Jack from renal failure at 14 days old. The fact that he was urinating enough to pee through his diaper was miracle enough to get the nickname "peepants" which then became "Jackpants".

How do you have time for friendships and hobbies outside of taking care of Jack?

Oh I could write a billion pages about juggling friendships and making time for hobbies outside of special needs parenting. It is so hard. It is hard to get away and it is hard to make time and it is hard to find people that care enough to stick with you through it all. How do I find time? I make time. The years of RSV isolation were the hardest. Jon and I had to be on the same page about both of our need to get out of the house. Since he was the one working, I got precedent to get out evenings and weekends. If you are single-parenting it, then I bow down to you and your amazingness to even get out once a month!

I realized that I would have to keep my close-friend circle small, which works with my introverted self anyway. I prefer deep and meaningful, over loud and exciting. I just don't have time for superfluous relationships. I have a small group of super close friends that I see almost weekly and then a few additional people that I see probably once a month. And then I stop there. It is all I can handle. These friends genuinely care and try to understand what it is like being Jack's mom and for that, I am grateful. I try to care about their lives, too, and remind myself all the time that I have to give into these relationships to keep them strong.

And hobbies. I am all about finding things outside of being Jack's mom that make me happy and excited about life. For me, that has been my PhD program, and all the books I read, and the water coloring I've been doing lately, and all the trashy Real Housewives I watch.

Will you ever have more kids?

Oh boy. Technically, the door is not closed all the way to more kids. Jon and I are kind of on two different planes with this one, so for now, it's just Jack. The technical aspect is that yes, I can still have children and the doctor has assured me that the likelihood of a premature birth is about 2%. Those are pretty good odds! But there is still a 2% chance. And Jon watched as I almost died and Jack almost died, and that is pretty rough territory for anyone to experience.

You seem to be in the news a lot. How does that happen?

OK. I promise we are not seeking out to be in the newspaper or television every week! My introverted self has been feeling a bit overexposed lately. And then, another newspaper contacted me last week about my Women Under the Big Sky project.... so you may see my face again. Hope you won't get sick of me.

I will leave it there as I have to go and get Jack from school. This was fun. Maybe I will make this more of a thing. Feel free to ask any question you are curious about! Until then.









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Wednesday, March 23, 2016

My Life Line


Two years ago today our local paper published this story about our family - Turning Hardship Into Hope - about how we choose to share Jack's story through blogging. The message we wanted to send was that the internet often gets a bad rap, but for those of us with medically fragile kids, it can be a life line.

I still believe that.

And this month marks seven years that I have been writing here. I started writing when I was pregnant with Jack. I was thinking this morning about how much the act of writing has been instrumental in my healing after his birth and in helping me find my way in this world I knew nothing about. I am not a writer. Most of my scholarly writing is pretty technical, so this "personal" take is often out of my comfort zone. And being vulnerable to an audience of friends and strangers is its own unique thing. You open yourself up to opinions and scrutiny, but largely, you open yourself up to a whole lot of love.

I know times have changed and blogging has changed with it, but I still can't bring myself to shut the doors on this little space.

This past month has been overwhelming. It was just one thing after another dealing with Jack and his needs. Nothing big, no surgeries, no crisis, but the daily grind of therapists and specialists and rehabilitation has left me feeling like we can never do enough for this kid. We have a running, never ending to-do list with him and not enough hours or energy left in any day to do it. The thing about having a kid like Jack is there is ALWAYS something you should be doing. So you always kinda feel guilty if you're relaxing at all, because relaxing means you're not working, and not working means Jack may not have as good of a shot at, well, life. And so we constantly weigh letting everyone rest and live a "normal" life, or we decide to work on x, y, and z.

I've come to understand that unless you have a child like this, you probably won't understand the weight of it all. And that's OK. It often takes too much energy to even try and explain it, so most of the time, us parents of medically fragile kids just keep treading. Just keep trying and moving and working on the list.

I was feeling like no one could possibly understand this grind, but then I remembered you guys. The people who read here and who have kids like Jack. When it comes down to it, I think my writing here is just so I can get an occasional "amen!" and then feel better about it all. The encouragement and the acknowledgement that others are going through the same thing right now, that there is nothing new under the sun, is what I can't let go of.

So seven years blogging and I still need ya. I still think this place is my life line. As others move away from words, I will still write here and use this place to let you know how Jack is doing, how I'm doing, and really, just hoping that "amen!" comes in loud and clear.
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Thursday, February 18, 2016

That Darn Hip: Three Months Post-Op

Last Friday we made our way to Bozeman for Jack's first checkup since the spica cast came off. The lead up to these doctors appointments always gives me anxiety and produces some serious tunnel vision. Life becomes all about Jack, his needs, and his future. Everything else kind of falls to the wayside. I start to feel the weight of Jack's medical issues, the frailty of it all. I never know the next time the rug will be pulled out from under us, so it's a hard balance we are left with. I have to give a shout out to my friends who let me talk about Jack and who understand when I am quiet and anti-social. But we try. This balance of trying to live our life to the fullest, trying not to constantly worry, all the while living with the reality of Jack's needs will most likely be the continual struggle we face.

Leading up to the appointment, we had heard some disconcerting news about the length of Jack's left leg and how that could make walking again very difficult. If you remember, Jack's hip surgery was done on the left side. I didn't give it much thought or even knew it was a possibility after surgery, but Jack's physical therapist mentioned that his left leg is now significantly shorter than the right. This length difference is due to the amount of bone that was cut out during surgery and how the hip was placed back in socket at almost a 100 degree angle. His left leg is now inches 2-3 inches shorter than his right. This length difference was our largest concern going into the doctors appointment.

As always, they did a quick x-ray and then we waited for what seems like FOREVER, for the doctor. When he came in, he let us know right away that everything looked good and that it seems to be healing nicely. Big sigh of relief. However, Jack's left leg is much shorter and will require what they call a "lift". I guess this lift will look like a couple of extra inches attached to the sole of his shoe. I take his shoe in today to get fixed. The doctor also told us that we will need to schedule a much less invasive surgery this time next year to remove the plate they put in his hip because by then, it will be fully healed. So, another surgery on the horizon.

Keeping us on our toes, I tell ya. But I was thankful for the "everything is healing good" news.

Jack is still slowly working on walking. In general, he is not a fan of the walker and prefers us to stand behind him and hold him up as he tries to walk. But we keep pushing. He is getting stronger and I don't think he's in too much pain at this point. I can tell by how grumpy he gets and I usually only give him Tylenol and it seems to do the trick. I now finally realize that the leg length difference is going to make this much harder than previously though. We keep saying our motto: slow and steady.


This next photo shows Jack after his class Valentine's Day party. Sigh.


School is going great. Jack loves it like he always has. I am so glad to have the surgery and spica cast behind us and to have a routine again. And this past month I am extra thankful for the collaborative and helpful nature of all of Jack's team. His school therapists work with all our private therapists. They brainstorm, make phone calls, and come up with plans. His teachers truly care and try to make school the best place it can be for him. He is doing well because of this huge team behind him.

Speaking of Jack's amazing team... off to speech therapy. I'll leave you with my new most favorite photo of all time.


P.S. Thank you to everyone who sponsored, ordered, or spread the word about the new Jackpants books! We totally exceeded our goal. Can't wait to get them into schools, to our family, and to our friends! Love what they stand for, love the message they send. Off to the printers!!
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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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