Wednesday, March 8, 2017

What A Gift

Recently, on a normal Saturday morning, dressed in our normal clothes (well, I did change out of yoga pants) we had our family photos taken. As a former professional photographer, I recommend this approach. We woke up at our normal times, I got in my normal 5 cups of coffee, we were at home not rushing around, and Jack was his relaxed Superman-missing tooth self.

Part of the reason we were so chill is that our friend, Skye, was taking our photos. She is hilarious and kind. I tell ya, give me a witty kind girl and we will be friends fast. Skye had asked us to be part of her amazing Birchtree Project which she describes as her "personal endeavor to showcase what is important each and every day... connection, kindness, gratitude, grace, joy... "

Count us in!

Here is the photo that she included in her project. As part of the project, she asked Jon and I to write the caption that would be included in the FB post, which quickly turned into an exercise of me bawling about how much I love our family.

"Our little family. I like that it’s just us three. I didn’t spend much time thinking about what my family would look like growing up. I knew I wanted to get married and maybe have children, but I was too concerned with the things I’d do and the adventures I’d go on to really dream about a family. But then I fell in love with this guy who lights up the room and had a baby who from his first miracle breath, filled me with such joy and purpose, and I knew – this little family is enough. More than enough, really. We spend a lot of time together. One, because of Jack’s disabilities and the care he requires, and two, because we are each other’s favorite people. Because of Jack, we will continue to be together, this family of three, for as long as we are each on this earth. It’s not an exaggeration to say that we are in it for the long haul and it is the privilege of my life."

"I feel like we have the essential ingredient for a close family – familiarity. We all understand each other and our needs more than anyone else in the world. What I’ve learned about my own needs after getting married and having our son is that I not only have what I need, but what I’ve always wanted."

We were honored to be part of this project. Skye also rocked our socks off with more photos of our family, which I want to share with you. Thanks so much for these... what a gift.

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Thursday, January 26, 2017

On Compassion Fatigue And Being Emotionally Available

I have started writing this post a few times, never feeling like I am quite capturing the thoughts that have been swirling around or the right tone. I'm not eloquent enough. I don't know if the right words will ever come. Many who read this are family and close friends, but I also know that many of you are parents of preemies or of a child with disabilities. You may understand what I am trying to say, no matter how clumsily.

If you're like me, your social media feeds are filled with families with the most beautiful stories. This micro preemie life, this cerebral palsy life, this non verbal life, this hydrocephalus life... it is so beautiful. We get the privilege of connecting across the miles and I get to see the much worked for milestones, the humor, the love. There is not a group of people I want to be connected to and with more. You are my people! I get to see the perspective that this life affords. I have no problem calling these kids our heroes because I know what they go through. Anyone, regardless of disability, that goes through what my child has, is a hero.

But this disability life is also filled with a lot of heartache. A lot of hospitalizations. Daily, one of our precious ones is having emergency surgery. One of our precious ones is fighting for their life. We have this daily reminder that life is fragile. It's not in the abstract. It's not a hallmark card. It's not a story you see on the nighty news or read about in a magazine. It's our reality. My heart breaks each time I see this in my feed. I've cried a whole lot of tears over children I have never met, but who are precious to me. I have tried different coping mechanisms. I pray. I grab ahold of Jack and hug him while I pray. I thank God for each breath he takes. I go into the kitchen to bake, to meditate on simple things. I get lost in a book. I meet a friend for coffee.

I wonder what more I can do, even with the miles. I wonder if the daily onslaught of this life, where kids don't make it out of the hospital, is a healthy place for anyone to reside that is desperately holding on to hope. I wonder about compassion fatigue, where I have a hard time summoning up concern for the suffering people in my own life, when I know my friend's child just died. I know suffering is not a race with winners, but my ability to care in a way that is meaningful, in a way I wish I could summon, gets dulled by this life. That's the hard truth.

I know human beings are very resilient. I know some of us can take more of this heartache than others. I know there are times when I feel more strong, where I can read another story, where I can send another email, where I can listen better. But other times I have to blanket myself to keep strength for the heartache in my own life. I have to distract myself. I have to get ready for the bad news that is sure to come. When you have a kid like Jack, there is always part of you waiting for the rug to be pulled out from under you. You try to stay healthy, to surround yourself with healthy and uplifting people, but if we are to be friends with literally anyone else on this planet, we open ourselves up to their problems, to their suffering.

I don't want to become hardened, but I know all of us need to protect our hearts so we are strong when the time comes. Likewise, I don't want to become emotionally unavailable to the people in my own life who need me.

I have no answers today. I realize this post is very stream of thought, with no easy ending, and I'm sorry about that. I am sorry this is not more uplifting. I tend to focus on the amazing and wonderful things about this life, but I also know that acknowledging this pain is important. I'm sure this is nothing new for the veterans of this life. I am still young, still so much to learn about suffering while remaining connected to others. Still so much to learn about disability parenting.

Jon and I had a hard conversation recently about Jack's life expectancy. I know many of you have had that conversation, too. How are we supposed to get up the next morning and dust ourselves off and get to work after a conversation like that? We just do it, right? But I guess I want to know what else you do?

I'll end there.
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Thursday, December 22, 2016

That Darn Hip: End of an Era (hopefully!)

Today we drove back from Missoula after Jack's recovery from the final surgery on his hip. Surgery was Tuesday morning. Maybe you've followed along on the whole Darn Hip saga, but this was a minor surgery where plates and screws were removed using the same incision from last year's doozy of a total hip (where we had a subsequent 6 horrible, stinky weeks in a body cast). Although "minor" never seems the accurate description with any surgery, anesthesia, and pain, we put it into the "Jack perspective." Comparatively, not a big one. And we are so happy this whole hip drama is over. Of all of Jack's health issues, I never thought much about the hip. Boy was the rug pulled out from under us! This has definitely been a hard year for him and my prayer is that 2017 is one filled with health. I know many of our readers are in the same boat - we just want health. Our baseline may be different from the average, but healthy for us means managing conditions, pain, growth, and no major flair ups, emergency surgeries, or general scariness. May HEALTH be in our future, yes and amen.

We had an early morning slot for Jack's surgery and still managed to spend quite a bit of time waiting for things to get going. Is there some sort of group with sway out there that wants to hear a mom complain about waiting rooms? Oh there isn't? Well, too bad! Here goes: why have us arrive at 7:30am and sit in the outer, tiny waiting room for 30 minutes? Then why have us come to the next waiting area for an additional hour when it's only in the last 5 minutes that they ask questions, have us sign the paperwork, take vitals, administer the Versed, and get the ball rolling. Is this to torment us? Is this to make sure we have adequate time to show up? I'm sure there are great reasons, but SERIOUSLY WHY????????????????????

Anyway, cute boy. Cute husband. Nervously counting the minutes until surgery.

Once they finally wheeled him off to surgery, it was less than a half an hour and done. Oh what sweet relief when we were able to head back and see a happy/agitated/confused/giggly boy. This kid has been under anesthesia too many times to count, and he does pretty well. I thought he would crash as soon as we got back to my parent's house, but he was too excited to be at Grams and Cheeks house, so No Nap Jack, who was loopy and thought he could just walk around, was the rest of our day. He did so well, though. And look what they took out of his hip! Can you imagine how good it will feel to not have that hardware in his teeny tiny body?

The next morning he woke up very sore, with all the numbing meds totally worn off. Thank God for narcotics and fun things to do like watch the same Elmo 6 times. Besides keeping Jack entertained, we also spent most of the day on my annual puzzle-around-Christmas and had lots of fun celebrating the holiday with my parents. We had a yummy Christmas dinner and presents afterward. It's just second nature to schedule most life/holiday events around Jack's surgeries and since we were in Missoula, why not do Christmas?!

I'll leave you with the photo we used on our Christmas/We've Moved card. I wish I could send one to each of our readers. Many of you have become friends. I don't write as much as I used to, but I just can't seem to let this place go. You have been such an encouragement to us, especially through 2016. And even with the rough effects of cerebral palsy (I'm looking at you, hip), we count our blessings of being able to move into this new home built for Jack's needs. So I want to wish Merry Christmas to all of you. And yes, to a healthy New Year.

All our love,

The Bennions

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Tuesday, November 22, 2016

A Good Season

Our little first grader

Get this dear reader - I am sitting in a coffee shop and I am writing to you. Just like old times. Remember back around 2010-2013 when I would write almost every day? In the thick of so much uncertainty about Jack's health, you saved me. I so looked forward to my writing time, my therapy time. Today I contemplated a quick FB update, but then it would either be 20 minutes there in FB land or 20 minutes here. Here won.

This makes me exceedingly happy. Last week I got a nice comment on the last blog post that said "We miss you Jessi, Jon and Jack! I hope everything is okay with the three of you xx." And I realized I haven't written since September and really, haven't told you much of anything for about 6 months! As always, Instagram is about the only thing I keep up with on a regular basis. It is where I post what we are up to more regularly. Lots of cute Jack photos and (possibly) too many photos of my coffee.

We moved into the home designed and built for Jack this August. I gave you all a quick tour and since then we have been making it feel more like home. It has been such an answer to our needs, some we didn't even realize we'd have back when we first purchased our little plot of land. Jack still isn't walking independently and our backs, each and every day, are so thankful to not have any stairs to contend with. Jack can get anywhere he wants (he's a master scooter) and we are loving the simplicity of our space. For a new home, it is still pretty small, but that only helps us on the hoarding tendencies. We are really in love with Jack's One Level - our white house with blue shutters a minute from school.

Just this week marked the year anniversary of Jack's major hip surgery. I gotta admit, it's not easy to see the photos from this time last year. Jack in his body cast is something I never want to repeat. Of all the dozens of surgeries, this recovery was above and beyond the worst to go through. We are still feeling the reverberations of it to this day. Jack is not walking independently, a skill he sadly lost. He also gave up eating. I don't think it's too far out to say that he will become brave enough to take steps by himself again, but it has been really slow going. A sad side-effect of the surgery was losing about 4 inches of bone in his affected hip. That means that walking is that much harder, with one leg so much shorter. Now he has his nifty "lift", but it is still difficult to relearn something that took so long before.

Same with eating orally. Jack has been on a hunger strike since hip surgery. Just yesterday we had our first meeting with a new gastroenterology team here in our town to tackle this big issue. I feel like I need to pause and praise sweet baby Jesus that our small town finally has a pediatric GI team. We spoke with the specialist for over an hour! I have never, in all of Jack's medical stuff, spent a full hour strategizing and discussing each detail of Jack's eating and digestion issues. It was a breath of fresh air to come up with a plan. We have hopes that Jack will become an eater again, but we also have the right team in place to make sure he is getting everything he needs in his tube feedings.

Besides Jack's hip and eating issues, his shunts are looking good. He is seeing PT, OT, and Speech therapists at school, as well as private therapy here and there when we can fit it in. Jack LOVES school like I've never quite seen a kid love school. We happened to land about the best aide we could have hoped for, who dove right in with tube feeding and lesson planning and making sure Jack is with his classmates as much as he can handle. It's pretty special. I don't take any of these blessings for granted. School has been the bright light this year in Jack's life. We are grateful and intentionally soak it all up because we know things may not always be so wonderful. When your medically fragile kid is healthy enough to love school and his team is about the best it could be - you pause and take notice.

Medical fragility is different than special needs. I have been pondering this a lot this year. Not only do our med frag kids struggle with special needs in the typical sense, they are also not guaranteed their very health. As parents, we spend our energies worrying about their very physical health, the next surgery, their next medical life or death crisis. I am fully aware that Jack's health is precarious. I have seen many like him struggle with living, the next breath is not guaranteed. I have been telling my close friends that we are basking in a good season. When I say that, I am talking about Jack's health. Sure his baseline is very different than other kids. His "health" is different, but when it's good, it feels like heaven.

So we take each of these seasons as they come and try to enjoy the good times. I love that we are in a good season (even with the reverberations from hip surgery) and as I used to do, here I am, tears streaming in a coffee shop.

Thanks for not forgetting about us and checking in. We are well.

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