Tuesday, January 27, 2015

8 January Tidbits

1) Jack and sports. Two words I never would have imagined together. He's been playing basketball for awhile now. Shooting some hoops and takin' names. Then for Christmas he got a bowling ball and pin set and this super awesome t-ball stand and bat. And he's having the greatest time ever. I think he mostly likes it because we cheer, clap, hoot and holler every single time like he's won the Superbowl or something. Go, Jack, go!
2) Is there anything better than snail mail? It's a lost art, really. This package was filled with some of my favorite things: candy, magazines, incredibly soft and warm socks, and a handwritten letter. There's nothing like getting a package in the mail. And around V-day, it's especially fun. Thanks, Lindsay!
3) Typing. It may be hard to see in this pic, but Jack finds each and every computer in our house and goes to town. I swear he is writing his autobiography or something. I hear the click click click and giggles and he's in heaven.
4) Can you pick out Jack's snowflake? Left side, bottom. He's doesn't have time for no stinkin' glitter.
5) Jack and his selfies. This kid will take a hundred selfies a day. Each night I go through and delete, leaving my favorites. But it's getting out of hand. I have to purchase more data on my phone just for the Jack selfies. Good thing he's cute.

6) Bribery. That's how we get through Target runs these days. Jack is a big fan of a Starbucks flat white and with that, I'm good to go for at least 15 minutes. Jack is getting too big for riding in the cart, so I've been thinking a lot lately about getting a few Caroline's Carts into our local jaunts. Anyone have experience getting one in your local store?
7) My motto as of late.
8) Jack is not messing around with his job as class line leader. I blurred out the other kids, but hopefully you can see that he is rockin' it. A teacher told me on Monday that they have to slow him down. The speed walking was getting out of hand. I'm so proud.
Bye now.
(P.S. You can follow along with our day to day fun on instagram! @jessibennion )

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Monday, January 19, 2015

Not Forgotten

It often feels like a forgotten place, parenting a child like Jack. That is why I blog, why I have the social media pages, why I tell you parts of our story.

And then we somehow find each other, but it's mostly through the heartache of broken dreams and the anxious nights bent over hospital beds watching monitors, willing our babies to take just one more breath. We find each other because we have to. The support and encouragement from one another is sometimes all we have.

Last week I posted a link to an article and it prompted a few angry comments. Those comments were deleted. Sometimes when you read a new idea, you may be defensive at first or challenged in some way. I was touched by the spirit of the article, being Jack's mom. It spoke to an important theme to me as of late. About the innate worth of human beings, based not on health or ability, but because of the very fact they are human.

Since I'm not interested in debating (because this is our story and not the right forum for debate), negative comments get deleted. I always scratch my head, though, when someone takes so much time and care into writing about how us special needs parents are too sensitive, too this, or too that. I hear often that we need a thicker skin. And more so, that we should just imagine how we would react if our child did not have special needs... because people shouldn't have to walk on egg shells around us.

I just want to shout it from the rooftops - I don't write or share here for you, the person whose life has not been touched by prematurity, medical trauma or special needs. That is why you may not get many of the thoughts or feelings we have as special needs parents. I am certainly flattered that you come back to hear about our boy. He is pretty great! My only suggestion is that if you choose to read and follow our story, you understand that debating special needs parents will get you nowhere.

Further, we do not have this luxury of "imagining" what things would be like had extreme prematurity not touched our lives. I can't change the fact that my child has all his diagnosis nor do I want to ponder what he or I would be like if he was totally healthy. To demand that is not only odd, it is a dangerous rabbit hole, certainly not healthy, and most importantly, does no good.

Jack's birth and the lessons I have learned from the past five years will forever be the landmark of my life. It changed everything. It is the perspective that I so cherish and I am much too protective over that perspective to let those who don't understand it, rattle my feathers.

But this week they did. Not every day is a "I feel strong day." Some days are just survival. But that is why we have each other. So we won't lose our perspective or the realization that we have this amazing community. We are not forgotten when we have each other.

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Wednesday, January 7, 2015

New Year, New Adventures

Jack went to Grams and Cheeks house for a week during his winter break(cue the sound of angels singing). While he was gone, we had lots of time to talk about 2015, as us planner types are apt to do. Jon asked me if I had any resolutions for the new year. My answer was simple - I just want to complete the things I already have going on in my life. My courses and exams, for example. Getting Jack settled into kindergarten. Those two things will most certainly be enough.

But then I got to thinking. It all started with the realization that this is winter in Montana and we weren't taking advantage of the fun. Things with Jack can get tricky and there is every legitimate excuse not to get out and try new things. The biggest thing preventing winter fun? He can't walk in snow. Balance on anything other than a flat, even surface causes him to lose balance and confidence. We have a couple sleds, but don't always want something where he'll get cold after two runs down a hill. It's getting harder and harder for me to lift and carry Jack for extended periods of time. Boy is getting big and his time spent on my hip is becoming less and less.

But then an idea. And because Facebook is awesome, I asked if anyone had a backpack carrier that would work for a kid Jack's size, because if we were going to carry him, at least we should be able to do it for more than five minutes. And because people are awesome, I immediately got a "sure, have ours!" and even someone offering to "send one in the mail!" 

We met up with our boy at Grams and Cheeks house and we had a proper adventure in the snowy landscape.

The thing I'm learning about Jack adventures: they take time. And energy. And perseverance. This is probably the most recurring theme in our life with Jack. For an outdoor adventure, add a bunch of things on to the average time getting a typical kid ready for an outdoor adventure and you've got hours extra of planning/prep for maybe 30 minutes in the snow.

New adventures are worth it, though, and here's why. His smile when he sees the world from a different view. His giggles and shouts of joy when we follow the path and find the river and get to throw all sorts of things into the icy water. Being with all his favorite people in a brand new environment... and ENJOYING it. Seeing new things, when vision and processing don't come easy. This is a big deal for our kid.

Any resolutions for 2015? I'd say we'll be adding on some new adventures.

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Wednesday, December 31, 2014

A Reflection: 2014

It's impossible to do 2014 justice. It was a year of extremes. January came and I was back down in Utah, desperately missing my little family, working my tail off on my PhD program. My parents drove treacherous and snowy roads to watch our boy each and every week. I was flying a lot. Jon was so sleep deprived.

A very bright moment last winter was when our local hometown paper wrote a story about our family.

The article centered around Jack's premature birth and the power and good of the internet to connect parents going through similar experiences. When I saw the headline, Turning Hardship Into Hope, I was like, YES! If there's any message I want to send out there, it's that so much good has happened because of Jack. There is hope, even when others can't see it, even when doctors can't see it, and even when I can't see it.

The other message that came out loud and clear is that this Life with Jack community has been my lifesaver.

“A lot of people like to talk about how the Internet takes up so much of our time and blah blah,” she said. “But for parents of kids with medical issues, it’s a lifesaver.”

You really have been there for me all of these years. I remember one very depressing week in Utah where I was struggling with my school material, missing my family so much, and stuck in the seemingly endless winter. I got three packages in the mail on the same day from those I have gotten to know along this blogging journey. People I have never laid eyes on in person, but who took the time to put together care packages. The kindness and encouragement you have always shown kept me going. It keeps us going, still.

The frantic pace of winter turned into glorious spring and I came home. We celebrated Jack's 5th birthday. We got Nelli Jo her wheelchair. I marveled at the boy Jack was becoming. The new things he was doing. The progress he was making.

When you have a kid like Jack, progress is measured differently. And it takes different eyes to see it. 2014 was a banner year for my new eyes. I always talk about the preemie perspective, but seeing Jack as just Jack is a constant thing in my life. Where I step back and survey what is really going on around here. My boy is five years old and he is amazing.

Summer came and we slowed way down. We were deliberate in sticking around these parts. This beautiful place we get to inhabit. We had been separated for far too long. We relished our family time and experienced new and exciting things together.

We went on our first official family vacation to a magical cabin on the most beautiful lake in Montana. It felt so very monumental to me. Something I only dreamed could occur when Jack was so new and so fragile. The photos from that trip are among my most treasured possessions.

More fun things from summer: Jack finding his love for boat rides. Wind blowing through his hair. Throwing rocks into the water. Waiting and watching for the big splashes. Walks around and around our loop. Sitting on the front porch. Greeting each car that flies by. Summer was the best.

This fall things got very quiet. I had a light load on the school front. Jack began his last year of preschool. We enjoyed our little routine. I became very intentional on reconnecting with friends who I did not get to see much at all while I was down in Utah. I had a spectacular little birthday party in our backyard on a warm September evening with Jon as chef.

In November, Jon and I were able to take a vacation to the warm and sandy beaches of Florida. I did nothing but get vitamin D. We dreamed about taking Jack to a warm beach someday. Wheels began to turn. We think he would love it.

And now it's past Christmas and the snow is deep and it's freezing cold. A New Year is upon us. Time keeps going and we keep trying to make this life work best for our boy. We have big things coming up. Lots of doctors appointments. A new school come fall.

Our boy continues to teach us the most important lessons about what matters and what doesn't. As always happens, I am sure we will stumble and not do things perfectly, but I feel like we are a team.

2014, you've been a good one.

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