Thursday, May 21, 2015

Saving 22 Weekers

The micro preemie world is small, so when an article comes out in the New York Times about us, we take notice. In short, the Times reported on a major study, conducted by the National Institute of Child Health and Human Development, which showed that if treated, or given life-saving care such as ventilation (instead of just "comfort care"), a baby may be able to survive at 22 weeks. Much of the article focused on the long-term "outcomes" of micro preemies, discussing in particular the findings for 22 and 23 weekers, as well as the implications of this promising research on the abortion debate and overall medical standards of viability.

Now, this whole discussion is not news to us. Chances are, if you have a micro preemie or have been around here for any length of time, you may have seen or heard about a living, breathing 22 weeker. Some of you may have been in a NICU with a 22 weeker or may even be blessed to parent one. You know Jack's story of being born at 23 weeks. I mention his gestation at birth quite often, especially in relation to how thankful we are that our hospital chose life-saving care (some don't at that gestation). Long story, this is NOT a new discussion. It is something we preemie parents think about a lot.

Like pretty much every other person who cares about this issue, I posted a link to the article on our FB page. I quoted a doctor in the article who said "I guess we would say that these babies deserve a chance" with my own commentary, "so glad to see this study and the dialogue changing for our earliest survivors."

And then I nervously waited.

But not for what you may think. No, I wasn't waiting for someone to disagree with me. Most of the time, people don't use our personal page for a debate on viability. It's a discussion that has occurred elsewhere, though, and there are people out there who think Jack shouldn't have been saved. I've seen online forums where he was discussed as having "a lot of problems" and the question posed "do you think they should have resuscitated him?"

But I wasn't waiting for that discussion, because this is a group of micro preemie lovers. No, I was waiting for something much more common. Honestly, I was waiting for the "perfect" comment, for someone to write "well of course 22 weekers should be saved! My child is the best example of this. My child is totally perfect, like a normal child now! They don't have any problems! You'd never know they were a preemie."

This happens quite often and don't get me wrong, everyone's story is important to tell. I love success stories. Some are quite miraculous and I know it provides a lot of hope for those scared silly in the NICU. But "perfect" outcomes are not the reality for most. And I have to wonder if the "perfect" comments are showing us just a glimpse of our tendency to place greater value on those who society thinks are whole, healthy, smart, or beautiful?

One of the main things I hope to get across by sharing Jack's story is that yes, his life is pretty amazing. Yes, he struggles. Although he is perfect to me, he doesn't have the storybook perfect micro preemie outcome. And you know what? That's OK, because he was still worth saving. Most importantly, his worth is not based on any outcome, but is innate to his very being. His worth doesn't come from my own ideas about him, or about how he should or shouldn't be, or even by any measure of how society views him.

All this to say, and in my most humble opinion aided by the hundreds of micro preemie stories I know, attempting to save 22 weekers should not depend on their likelihood of a perfect outcome. We should attempt saving because they are human and deserve a chance.

If the grand litmus test is no disability, no challenges, no risk, then very few will ever be saved. Is that the kind of cut throat world we want?

My preemie mama friend, Molli, said it best. "Children who are not "perfect" are just as worthy and just as loved. At what point do we realize as a society that disability does not equal poor quality of life? At what point do we stop saying "I don't care if it's a boy of a girl, as long as it's healthy?" I love my babies, warts and all, as much as the next person. They are worth as much as any other children. They are beautiful and funny and imperfect and amazing and I wouldn't have it any other way."

Amen, sister.

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Friday, May 15, 2015

To My Boy On His 6th Birthday

I listen to you in the other room. You are watching one of your shows. One you've seen a thousand times. You are having a full-on conversation with what you are watching and as I listen, I strain to understand just what you are saying. Happy sounds. Vowels and consonants. Music to my ears, but foreign none the less. Oh how I love your voice. Especially when you get sleepy, so many sounds come out. It's my most favorite time. When your body relaxes and you are able to release all those thoughts. You speak as if we can understand you. And we can, because we know you are happy.

When you were dedicated at church, one of the pastors, before praying over you, said you would be a mystery to us. That there would be times when we would scratch our head and wonder about you. When he said it, I didn't give it much thought. At that time you were just turning one. But as I look upon you now, as a six year old, he was so right on the money.

You are a mystery. We wonder about the future. Oh the questions we have. But we cherish each day. As we watch you grow and come into your own personality, we notice you are silly, quirky, loving, happy, and energetic. You fiercely love your routine. We don't know the why or the how most of the time, but we do know that you are loving life. It's all we could have hoped for.

I notice each new freckle on your beautiful face. I notice the way you walk and how you adapt to each growth spurt. You are tall and lean like daddy, but have the wide and big hands of your Grandpa Cheeks. I see that you are about to lose your first tooth. How can this be? My sweet baby Jack is growing and time does not stop.

You live with gusto. At the Governor's signing of the ABLE Act, daddy was holding you and you noticed that the person he was chatting with was drinking a coffee from Starbucks. You dove in for a drink like there was no tomorrow. The look on this person's face was priceless. You just went for it. No fear.

Kinda like how you line-lead at school. I have been just tickled by how serious you are about being the line-leader. Like it's your job. Proud mama, here.

Tickles are still your favorite. I think you would choose to be tickled all day, every day, if you could. And I am happy to oblige, because you have the best giggle around. I love each moment I have with you. Our walks. Our playtime. Our cuddles and nose kisses. When you snuggle in to fall asleep. I love the thousand ways you communicate, but especially when you come find me, grab my hand, and take me to play with you. I know these moments are fleeting. As you grow I am so aware of that.

The greatest lessons of my own life have come from you. The perspective you have brought to my life, I could write about forever. The razor sharp vision you've given - it is a gift. In the disability community, I know it's not the politically correct thing to say these days, but you inspire me. You really do. I don't glorify our experience or make you out to be some angelic being. You struggle just like every other human, but that doesn't mean you can't inspire me. I've seen where you've come from and just how far you've gone. I want to be like you.

No one I know goes through each day with as many physical and mental roadblocks as you do, and still, you have a giant smile on your face. The joy you put out to this world is contagious. From the moment I knew I was having you, it has been my absolute privilege to be your mom.

Yes, I will read the bath time book to you as many times as you want. I will blow those bubbles. I will take you on another walk. I will play peekaboo and jump on the bed with you. I will take you up and down the stairs and outside. I will sit in the sunshine with you anytime, sweetie. I will always be your biggest cheerleader.

Happy 6th Birthday, my boy. I can't wait to see what you do.

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Monday, May 11, 2015

To Jack's Week!

May 2nd, blurry eyed and four minutes before midnight, I turned in the last set of my writings for my PhD coursework. It has taken over a week to get off that finals "high." Or maybe it's more of a "low," where zombie-like qualities take over, but you still can't sleep because adrenaline is coursing and you pray to God you will "at least get a B!" and you second guess every single sentence you wrote. At least that's been me.

After trying to chill out the rest of that weekend, I planned a little celebration with friends because I missed all of them and needed to be reminded about real life. Thanks, girls, for coming over and reminding me just how fun you all are. The party landed on Cinco de Mayo, so we had a Mexican feast and just sat around talking and passing a friend's newborn around. Pretty much perfect evening.

Thursday was a very special day, because we were invited to the signing ceremony of the ABLE Act at the Montana capitol building.

This bill was something Jon worked on during his own down time and to see it come to fruition was a total highlight of our year.

For people who work in politics (Jon) and who study politics (me), it was incredible to watch such a bipartisan effort on behalf of this bill. After Governor Bullock signed the bill, we introduced him to Jack.

It will certainly go down in our history book!

After the signing ceremony, we hopped in the car for a weekend in Billings, where Jon is from and where his parents and a couple of his siblings live. We were able to go on a couple dinner dates (thanks Nans and Pops!) and we took Jack to an indoor ferris wheel.

Verdict? Liked it when it was moving, hated it during the stop/load/unload of people. I don't see any amusement parks in the near future, unless we can skip the lines and waiting time.

We are back home and gearing up for another trip. So begins our travel season and the time when Jack sees ALL THE DOCTORS IN (what seems like) THE ENTIRE STATE OF MONTANA. I will let you know how they go. On the horizon: neurosurgeon, pediatrician, gastrointestinal, ophthalmologist, orthopedic, and the good ol' dentist! Fun, right?

This week we are entering is always an interesting one for my emotions. Our boy turns 6 on Friday. Six years old! Beyond the fact that he is now, most assuredly, a kid, it is hard. I suspect it will always be, because how can I not think about this very week, six years ago? To not think about everything that led to his early birth and how the trajectory of our life veered completely off course?

Each year, though, I am more and more amazed at this gift we've been given. And to see everything that has happened because of that Friday, May 15th, 2009... yep, it's a gift.

To Jack's week!
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Wednesday, May 6, 2015

It's Official!

We are so excited to say the Montana ABLE Act is now the law of the land! The bill, SB 399, passed with near unanimous numbers in the Legislature and was just signed by the Governor.

This law will truly be a life changer for kids like Jack and their families. ABLE accounts allow parents, grandparents and friends of children with special needs to save money for them without it affecting their eligibility for need-based programs like Social Security Disability and Medicaid.

This was such an amazing process to watch. This bill wouldn't have become law without the bipartisan efforts of many dedicated legislators, including the bill sponsor Sen. Fred Thomas - Stevensville, co-sponsors Sen. Mary Caferro - Helena, Sen. Cynthia Wolken - Missoula, and floor sponsor Rep. Greg Hertz - Polson. There were also some key people from the law firm of Crowley Fleck - Aimee Grmoljez and Mike Green - who offered their services pro bono to help write and lobby the bill. There were several others who came to each and every legislative hearing (four hearings in total!) to share their stories with legislators. Those stories helped so much, because it showed the incredible need for this law. Many thanks to the families who showed up to push for this bill!

Now that it's the law of the land, it will take a few months before people can take advantage of this new opportunity. We will continue to keep you in the loop and work to make sure the law does just what was intended.

Working on this has been the highlight of our year. Thanks again to all who helped and cheered us on! It meant the world to us.

-Jon, Jessi and Jackpants

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