Wednesday, June 29, 2016

The Calm Before The Storm

It's so like me to pick the MOST DRAMATIC TITLE for this post (well, every post, really). Because feelings. We are quickly nearing our move date to Jack's one level and along with all that excited/happy/joy is the realization that we are ending an era. One that saw us through our early days in Helena, through Jack's birth and everything that's happened since. These walls have been our protection. They sheltered us in every sense of the word. When being at home was doctor ordered, it was our sanctuary where we could watch Jack get stronger and stronger. We've taken a thousand walks around our loop. The pine tree smell is in our blood. If you can't tell by now, I just adore our little home in the woods and appreciate everything it has been for us. Bittersweet feelings for sure.

But then we walk through our new home and know - this is the best move for Jack. This is looking more and more like our forever home. When I told you about Jack's one level, I explained our vision and that it would be built so he has access to everything. I won't have to worry about him falling down the stairs. This is a very real fear of ours that will go away as soon as we're there. He can come and go as he pleases. Our back's will get a nice break! When I wrote that first post telling you about the land we purchased, this was all in the dream stage. But to see it come together has been exhilarating. It's will make a huge, tangible difference in our lives.

Right now life is a crazy, fast-paced mix of moving boxes, trips to Lowes and Home Depot and a steady stream of builders, contractors, and the like. Building a house has been a crash course in "we don't know what we're doing!" and "we're having the best time ever!" It really has been so much fun. It's super exciting right now because we can see all the finishes of the house, so we are finally seeing how all our choices turned out. It's also scary because those are our choices, they're already in, and hopefully they don't look like a 7 year old put them together (please, dear baby Jesus).

In the midst of all this, we decided to take a breather and head to the family cabin. We needed some calm. No internet. No cellphones. Just the rumbling river to listen to. Oh, and Jack's Elmo's World collection. (Side note: Jack still loves Elmo. He didn't grow out of it. This makes us wonder if Jack will be 38 and still watching Elmo. Please start fasting and praying.)

Ah the cabin. The place where I read all the books and eat all the s'mores. Is there anything better in life? No need to answer my rhetorical question, because no.

First, there's something magical about sleeping at the cabin. All that fresh air and we had a little sleeping angel on our hands.

Carver Jon was in full swing. He has the busiest second job, I tell ya.

Don't feel too bad about his blistered hands, he got in some good reading time, too.

Jack was just chill. I love that he feels so comfy at the cabin.

I was really into this book. I know I'm late to the game. Quiet... wow, life changer.

(I was out with some close friends last week, lamenting how I wasn't seeing them enough. I'm one of those people who needs to keep friendships, conversation, etc. highly connected and deep. They said read this book! and thanks to the 2-day shipping gods, was able to dive in right away. It explains so much. As I came into my thirties, I was realizing that I had some introverted tendencies. I was cherishing alone time to recharge. I was enjoying my solitary and cerebral work as a PhD student. I was appreciating and longing for deeper friendships with a tighter-nit group of people. No fluff for me, please. Then I took a Meyers-Briggs personality test and yep, INFJ (I for introvert). I was still confused, though, because I don't have all of the introverted aspects one may first expect. I don't fear public speaking and I can small talk with the best of them. I enjoy blogging and sharing about my life through social media. I have times where excitement, adventure and loud are my jam. I'd say I'm slightly just over the introverted scale and Quiet explains so much about introversion, how introverts operate, and the power they have. Highly recommend, ya'll.)

Back to the cabin. Off course, lots of Jack cuddles.

I also wanted to do the annual photo on the cabin steps. This kid.

And now we're back to reality. Packing boxes and running around tying up loose ends. We pray Jack loves his new surroundings. Change is not easy for him and if you think of it, say a little prayer that he feels at ease with his new space and routine. Jack's one level is our next stop!

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Tuesday, May 17, 2016

Seven Years Old

Our strong, sweet, funny, effervescent boy is seven. It feels like we are entering a new era. Something about being seven just seems OLD to me. Like total kid status. It doesn't help that Jack is growing like a beanpole and seems to shoot up an inch every week.

It wasn't until late afternoon on Jack's birthday when my thoughts went there. Although I find myself dwelling on it less and less as the years go by, it's still there in the back of my mind. I went to the moment when I was told I would have to deliver him so, so early or I would die. Around 4pm on May 15, 2009 the nurses brought in extra pillows to surround me in the bed (they were concerned I was about to experience eclamptic seizures) and through tears the doctor told me that Jack was not viable as a 23 weeker, but alas, I could not remain pregnant. Such is the scourge of preeclampsia and HELLP Syndrome. Delivery of the baby is the only way to save mom's life. Or you both die. Even as Jack was turning seven, I briefly paused, remembered, looked at the clock, and then went on my merry way. I only thought about Jack's birth one more time, around 8:45pm. That's right around the moment when he was born. When we heard his tiny voice wail. It shocked everyone that a one pounder could make such a noise. Then he was quickly intubated and our four month crash course in the neonatal ICU began. But enough about that. We have a seven year old boy to celebrate.

Birthdays are tricky, bittersweet things. Thoughts and memories come and go. But birthdays get better. In fact, a lot better.

Since Jack could care less about loud celebrations and birthday cake, we did what he likes. After a quick search for "big indoor pool at hotel" (which is kind of a hard find in Montana) we headed over to Bozeman for a weekend of swimming, Jack's favorite. Pure joy in the pool, I tell ya.

I kept looking at Jon wondering how in the world we happened to get the best child in the universe as our very own. I wish everyone could experience his joy, his sparkle, his love, his affection. He is sweet in every sense of the word. And he's also fiery and opinionated. He's so strong. He clears every hurdle with gusto. He had a hard year with his hip surgery, but he takes what life hands him and continues to be that same fighter he was when he was born.

Seven years old is a big deal. There were so many days when Jack was younger where I imagined, longed, and pleaded for him to get to be a kid. I prayed for the day where he would be strong and healthy enough to just live his life free from hospital walls or our own walls of RSV isolation. And here we are. There is so much to celebrate.

Happy Birthday, Jack. We love you so much.
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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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