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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Unknown said...

Great post Jessi! Loved hearing more about you guys, and appreciate you raising awareness of preemie life. It is a wild and crazy ride but one which is so, so, so worthwhile.

Jessi said...

Thanks so much for the encouragement <3

Tran said...

Hi Jessi,

Thank you for writing. I have learned so much from reading your blogs. I have a few questions:

-What is ABLE act? If I live in California how do I go about to have similar act activate?
-You mentioned that there is regression with Jack, is it common? Did you ever find out why Jack regress and what was the effect with regression for him?

Please forgive me if my questions seem so personal. Thank you for telling us about Jack, he is my hero thus far.


Jessi said...

Hi Tran, I'm almost certain that California is working to enact its own ABLE Act. You should be able to Google it and find out. And Jack is doing great, just has the typical micro preemie issues he deals with. Thanks so much for reading!

Anonymous said...

Thank you for addressing the topic of more kids

I am in a similar situation as you

It is hard not to be on the same page in a couple on this, so if we're not both on the same page, we're not doing it at the moment

(In our case my life would not be in danger but prematurity would be very likely)