Wednesday, February 25, 2015

The Hard Weeks

I have the tendency to want to highlight all the magical and happy moments of our life because, well, there are so many. People on the outside often look upon a situation like ours with pity and pretty much all the time I want to scream it from the rooftops - I really, really love our life. No need for pity here. Both Jon and I are doing things that fulfill us. We are chasing dreams. And we have the most amazing, perfect, living and breathing child who seems to be the icing on the cake of this whole adventure. So, no. Pity or pats on the back or condolences are not needed and I don't go looking for them.

You may wonder why I don't often write about the hard things. There are many reasons, but mostly because I don't naturally gravitate toward the negative in this micro preemie situation. I am well aware that many like Jack do not survive even 24 hours after birth. How could I be anything but grateful for his life and for our existence together? Plus, as the years go by and highlighted by our own experiences, my personal ethic regarding human life is expanding. I have proof right in front of my eyes that all life is precious. It's not cliché or political talking points in our house. There is innate dignity in all human life, no matter ability or deemed worth.

I also fully understand that many need to talk about the hardship. Because, you guys, it is hard. Talking about it and admitting that we need help or support is part of the healing process. It's how we get through. The rare times I have let you in on the hardship, you have been there.

A perfect storm was brewing last week and it took the wind out of my sails. Parenting a child with special needs is draining to the very core. I'm not going to list off all of Jack's medical or neurodevelopmental issues, but let me assure you, it is rough. And amidst this, we have been trying for months to find the right place for our guy to go to kindergarten.

Just so you know - This is not about a mom being emotional about her child going to school for a full day. I get that. I will be that mom. But this is different.

This is about a mom worried for her child's physical safety. This is about a mom worried that someone could take advantage of her non-verbal child. This is about letting go of control and praying to God that someone will be there to make sure our boy doesn't fall down the stairs and break his neck. This is about getting the right people in place so our child can eat while at school, be nourished, and not refuse food or choke to death. This is about a child who has cortical blindness and finding a way for him to learn may be difficult. It will take someone who really cares. This is about finding people who are not just afraid of a diagnosis they see on a page.

Finding this school, this group of people, it is so hard. It is stressful. So I'm feeling all the things this week.

And then I read this. Our state's home for developmentally disabled adults is absolutely failing its residents. These are people like Jack who will never be able to live independent lives. Residents with mothers and fathers, sisters and brothers, human beings who deserve lives of dignity. Horrific abuse is occurring (much more than what I've linked here) and I just sit and read about these kinds of stories taking place so close to home and think about Jack. I told Jon we have to do everything while we are living to make sure Jack doesn't end up at this place.

Sometimes it is too much. Most weeks are full of beauty and life, but other weeks are hard.


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Wednesday, February 11, 2015

Romanticizing That Which We Do Not Know

I texted Jon the other morning: "off the top of your head, what advances in modern med have enabled Jack to be alive?"

He quickly replied: "ventilator, steroids, shunts, gtube, preemie IV food, incubators, vaccines, Synagis."

I read his list and thought, man, that is just scratching the surface. A text cannot contain what it took to get Jack to where he is today. The combination of medication, the equipment, the surgeries, the interventions, the transfusions, the antibiotics. The list goes on and on. I easily forget the amount of medical care Jack received from his first breath. And the science behind it all baffles the mind. How fortunate we are to live in a time when our son is alive because of these things! Just 30 years ago there was hardly a case of someone like Jack surviving. Today, because of these advances, micro preemies are living full lives.

You may wonder why I asked Jon that question. It's because as Jack's mom, I was mad. I was reading where a mother was lamenting her childhood and how bad it was that all her illnesses were quickly treated with antibiotics. And she was going to do things right this time around and tell us all in the process what "right" means. Instead of throwing antibiotics at an illness, her children would get a more natural or "wholesome" approach to their well-being. How wonderful for her to have that luxury. Reading further, she was praised in the comments for her wisdom and for her raging against "the man." Then she tried to sell some essential oils.

Friends, I have some righteous anger burning. There is something going on with our middle to upper-class American society. I am seeing it EVERYWHERE. We have lost our perspective. Things have been too good and not enough of us have seen life with medical struggle, without things like antibiotics. We have romanticized that which we do not know.

When we were getting our so-called over-abundance of antibiotics in the 80's, scientists were perfecting those antibiotics for premature infants. These are babies born with zero immunity and only live because of antibiotics fighting off infection.

Further, there are many places in this world that have zero access to even the simplest of antibiotics. Mothers are desperate for them as they watch their children die from preventable disease. And not only antibiotics, but medical care in general. Oftentimes, women walk 15 miles for a single vaccine for their child.

How privileged are we to complain about modern medicine. How shortsighted we are.

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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. (source)
 
 
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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