Sunday, December 07, 2014

Christmas Party

We are blessed to be part of a big, supportive community of families affected by Spina Bifida. Each year, the organization hosts a fabulous Christmas party. We get the chance to catch up with old friends and make some new ones.

It is the highlight of Esther-Faith's holiday social calendar. She looks forward to seeing Santa. This year she told him she wanted a nerf gun because her brother has one and she needs to defend herself.

This year however, Santa had stiff competition by way of Ms. Wheelchair Ohio. A good friend and all around awesome person, Amanda Young (follow her on FB and Instagram, she's awesome). She let Esther-Faith try on her crown before she jetted off to another event.

Even though Tim couldn't be there, it was a lot of fun hanging out with good friends, and soaking in some Christmas spirit.

Two incomparable beauties.


Current and possible future Ms. Wheelchair Ohio.

I. just. can't.

She wheeled right up to him,
transferred from her chair to his lap,
and gave him a hug.

After telling him her wish.
I think she checked to make sure his beard was real.

Santa gave her a precious moments
ballet musical figurine. 



© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Thursday, December 04, 2014

"The Spirit of Christmas"



I debated posting the letter you are about to read. It is personal and private. Before I took it to the RTC to give to my oldest son, I let my mother and mother-in-love read it. I wanted their opinion about whether or not it was the right thing to do. To appeal to Isaiah on an emotional level when he can't process those appeals.

The last two weeks have been pretty good for Isaiah. He has struggled, sure, but the negative behaviors have been less severe and he is working harder to keep himself in check. Honestly, it makes us proud.

But during therapy this week, he admitted that he doesn't know how to form positive relationships. It was a bittersweet moment. A moment of maturity for our boy, and utter sadness for us. That he is aware of such a struggle. And yet, that he is unwilling to accept help.

My mom suggested that I share the letter. That it is one of the most honest and raw things I've written in a while. She's right. I find it hard to write lately. But I didn't know if I should. Because it is not something I would write for public consumption. I wrote it for my son.

But every night since--during the Jesse Tree devotions with Isaiah's siblings--I've felt a nudge. That maybe she's right. I should share it. Not because it is particularly good, but because it is a genuine snapshot of where we are on this journey with our boy.

And tonight, again, there were a couple of passages that spoke to me...

"God promises to be with us as long as we are faithful to him." from the book "Jesse Tree Devotions"

"Even the small and weak can help those bigger and stronger to find their way." from the book "Advent Storybook"

Every night there is something, in one of the readings that hits me like never before. Even though we've been reading these same books since the year we became parents. It all feels so fresh and so new and so raw this year. Because there is something missing. Someone missing.

And so, I share my letter to Isaiah with you, and I encourage you to buy the book "The Spirit of Christmas" to read with your family. I honestly cannot make it through the book without choking up.

In fact, when I took the book to read to Isaiah during therapy this week, his therapist (who we love) wheeled his chair around to see the pictures. It is both a well written and a beautifully illustrated book.

And whether you are a new parent or you've been parenting so long you don't remember your life without children or grandchildren, this is a fantastic book to read to your kids.

It comes highly recommended from every member of the HennHouse.



-----

Dear Isaiah:

As you can probably imagine, having lived with me for almost a decade, the house is mostly decorated (and has been for almost a month), there are trees in almost every room, and we've started the Jesse Tree devotions--complete with an advent wreath (that we don't plan on melting this year) and loads of tradition.

This year, dad and I put the white tree in the fireplace room, rearranged the furniture, brought the pew back in the house, and got additional track for the train. All of those much loved brass candlesticks are on the mantle and all of my grandma's antique glass ornaments are on the white tree.

We are picking out the real tree for the front room this week. We'll get it, and maybe a wreath for the front door, by the weekend. It will be in water and the boughs relaxing before the first light or ornament is put on the branches.

We're thinking about putting the tree in the corner in the front room because we've moved the TV and the couch and your sister's doll house.

Isaac got a new tree this year. A six foot white tree with blue lights. He put a silver star on top and purple and gold ornaments on the branches. It is right in front of his window, and he keeps the blinds up so the neighbors can see his tree. As you may know, blue is the color of peace and used a lot during the holidays. It is also the color that represents law enforcement--maybe because police and sheriffs and state troopers are actually PEACE officers. The family of law enforcement is called the "thin blue line." Maybe Isaac picked his tree because he is bound and determined to follow your dad into law enforcement; maybe because he just likes blue.

Isaac has been saying lately how much this year has sucked for him. "The worst year of his life," he called it. The irony is that this has been an AMAZING year for him. He got into Metro school. He made a Crew development team. He got a scholarship for a year's worth of dance classes. But when he looks at his life, he still sees it as terrible. He's never articulated why, but Dad and I think we know.

On Sunday, the first Sunday of Advent, we started Jesse tree again. We're doing things a little differently this year. Dad and I sat in the front room one day and laid all the Christmas books out on the floor and split them into piles--one pile for each day of Advent. Then we wrapped the books in Christmas wrapping paper. We didn't wrap any books for December 13, because--like we do every year--we picked out new books to give you kids for St. Lucia Day. I think you'll love your book.

Dad and I didn't just randomly assign books to the days. We put some of our favorites in all of the piles. You know how we do at the HennHouse for the holidays. Lots of tradition and lots of family time and lots of making of memories.

I always forget that the first devotion of Jesse Tree is the foundation of the whole series. A scripture from Isaiah that talks about how Jesus is born of the line of Jesse (and Abraham and Isaac and David and Solomon and Ruth, etc...) I guess that should have been my first warning. That the scripture should come from the book of the Bible your first mom named you for. She must love you very much to give you such a strong, prophetic name.

Your brother is in charge of the Bible readings this year. He struggles to find stuff because he is so used to looking for answers in a search engine, but he is managing.

Funny story, the other day we were at the library and he was working on homework. He was doing a "Declaration of Independence scavenger hunt." He was typing the questions into google and getting frustrated when the answers weren't popping up. I finally suggested that he actually just READ the Declaration of Independence and find the answers there. It was as if a light bulb went off above his head... you know, like those cartoons when someone has a good idea? Like that. He just said, "Yeah! I think that would be much quicker!" I chuckled to myself. We didn't have google when I memorized the Declaration.

Anyway, the first day of Advent, he went searching for the book of Isaiah in the New Testament. He read the scripture, and at the hearing of your name, I choked up a bit. You didn't really participate last year. You were angry and upset a lot, and you excluded yourself from a lot of family activities, but you were present. You respected my traditions. You respected family time. And reading the Bible verses was your job.

It makes sense that Isaac takes over. As you know, dad is still working afternoons. He calls when we read if he can, but it is really just the three of us. It really feels like something is missing. Someone.

I miss you, Isaiah. With all your teenage brooding and angst, I still miss you. I miss all that you were and all the potential that you have. I miss having you in the house. Your mess. The awful, awful smell of your shoes. Your big, gorgeous smile. The way you hang around the kitchen while I'm cooking. I just miss you.

The second day of Advent, Monday, we read about creation and then Esther-Faith and Isaac unwrapped a couple of more books. "Polar Express" was in the pile. That was always one of our favorites. We would read it and then make hot chocolate and watch the movie. Do you remember that? The other book that day is one of my very favorite Christmas books. We found it the year you moved in. It is the perfect book for new parents. In fact, the year Esther-Faith was born, we bought three more copies and have been saving them to give to each of you the year you become parents.

Becoming a mom--your mom--was the very best thing I've ever done in my whole life. Admittedly, it has not gone how I imagined, but really, I wouldn't trade a single minute. Not even any of the minutes I've spent reading incident reports or worrying about you. Not one minute was wasted. Being your mom is the most important and special thing I've ever done. Ever.

When I started reading "The Spirit of Christmas" to your brother and sister (and dad, he was on the phone), I almost immediately felt the tears pressing against the back of my eyelids. I knew they were there. I knew why. I knew what the book was about and what was coming in the prose. But when the tears pressed out and down my face, I was unprepared for the absolute pain I felt in the missing of you. In the time we've lost. In the path you are taking.

Dad and I know how hard this has been for you. And we are so proud of the moments when you dig deep and really, really try to change the course of your own life. When you stop jumping from path to path and make a decision about the course you want your life to take. We think, that's him. That's the boy we helped to raise. That's that boy that will change the world.

We are proud of your career plans. We are proud of your effort. We are proud to be your parents. Don't ever forget that we love you. That we are your safe place to land.

When I got to the end of the book, to the second-to-last page, I completely lost it. Isaac knew why--in exactly the same way we know that this has been both the best and the worst year of his life. Esther-Faith started crying, too. I don't know if she knew why, but the sadness and the feeling of missing was palpable.

The missing of you.

Reading that book out loud was poignant this year. Because I remember the first time I read it to you. When we sat on that 15-foot church pew in the fireplace room and you gently leaned against me. How you wanted me to read it again, but you didn't know how to ask. How you asked every day for a week for me to read it. And how we've read it at least a dozen times every year since.

I still have three copies in a red tub in my closet. It's the same red tub where we hid all kinds of Christmas presents over the years. It, like the book, has been there since you were just a little boy.

There is a passage in the book, on the second to last page, where I lost it the other night, that I think you need to hear. You should memorize it. It is how I was feeling your first Christmas at home. It is how I feel now.

That's when the Spirit of Christmas smiled.
"Remember, this all began with a child.
Because it took nothing but love to begin it,
it's not really Christmas if love isn't in it."

Your tree may be large as the room will allow
with a big yellow star on the uppermost bough,
but of one thing I'm certain,
I'm sure of one thing.

It is love that makes the angels sing.

And that's when I got it.
That's when I knew!
The thing that was missing
from Christmas was you!

And so then, my darling, wherever you roam,
may you always be safe...may you always come home.

For as long as the world still spins and still hums,
wherever you are, and no matter what comes,
the best part of Christmas will always be...
you beneath my Christmas tree.

You are loved. 


From, Mom.



Excerpt from the book, "The Spirit of Christmas" by Nancy Tillman. 



© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Sunday, November 16, 2014

FFFN: Making a Gratitude Board

This past Friday we created a Gratitude Board for the dining area.

First we took an old 2' x 3' bulletin board that wasn't being used and painted the frame black. We ordered a "Give Thanks" wall art sticker, and bought some thumbtacks. (Total cost ~$10.)

We hung the board on the wall Thursday night.

ALL DAY Friday the kids were trying to figure out what we were doing for Friday Family Fun Night.

On the way home from work on Friday, Isaac and I stopped to pick up our Thanksgiving platter from the Clay Cafe.


Once home, we ate some dinner and got to work on our FFFN project. We explained it to the kids and they LOVED the idea. We cut pieces of plain scrapbook paper and glued it onto some pieces of patterned scrapbook paper. 




The kids made up some "rules" to go with the gratitude board. They agreed that we should leave it up for all of next year and that everyone should write two things they are thankful for every day. Oh, and they agreed that they won't repeat anything. Which means that Esther-Faith can only be thankful for the dog one time.


It was late when we finished, so Esther-Faith went to bed while Isaac made himself some popcorn (an almost nightly occurrence since the braces came off) and watched a movie ("Elf"). Tim and I decorated a Christmas tree and sat by the fire for a while.


The next morning there was a little bit of sibling discord. One wanted something the other didn't want to share (in this case it was the dog). There were some not nice happenings (perhaps a bit of arm twisting and a hit or two). After talking to the kids, we had them talk to each other (sometimes, that is the BEST consequence--slowing down long enough to actually listen to each other, and listen to the reasons they are making the choices they are making) and then they decided to write something they were grateful for about each other.




They love each other so very much, but with the cold that is making its way through the house, early morning grumpiness, and not having eaten breakfast yet (even though they could smell the Amish Cinnamon Bread in the oven), they sometimes find it hard to remember WHY it is they love each other.

The Gratitude Board is helping.


© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Saturday, November 08, 2014

FFFN

When we first became parents, and for many, many years since we have upheld a weekly tradition of Friday Family Fun Night (FFFN). Over the years we've done everything from attend the symphony to lay in the yard and find animal shapes in the clouds.

When Isaiah first went to the residential treatment center, we really tried to keep it up. Honestly, though, it was difficult. We found ourselves skipping a week or just putting on a movie so we didn't have to acknowledge what was missing.

Lately, though, we've put forth a renewed effort to return to the more meaningful FFFN actvities. We've starting the planning on Monday--like we used to. We've started turning off the screens--like we used to. We've started laughing a lot more, having more meaningful conversations, and experiencing things together. Isaiah was even able to earn a community pass a few weeks ago to join us.

Last week, we went apple picking.

This week, we created a unique platter for the Thanksgiving table.

We're already all thinking about what we're going to do next week.

It's nice. Not always easy, but it's nice. It feels right. It feels good. It feels hopeful.














"I will be a Father to you, and you will be my sons and daughters, says the Lord Almighty."
--2 Corinthians 6:18




© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Monday, November 03, 2014

Pictures to prove it

Isaac, Esther-Faith, and I came to the library tonight with different things we were hoping to accomplish. Esther-Faith has a Girl Scouts meeting. Isaac has some homework to do, he's looking for some skateboarding books, and he took a side trip to the chocolate shoppe three stores down for some caramel popcorn. I brought the laptop hoping to cull some pictures.

I have culled some pictures. Isaac and I have marveled at a few truly amazing and dramatic photos that Tim took. In awe of his ability and eye to capture a moment.

But I realized, in the more than 6000 pictures I have yet to go through, we've done a lot of living. It has been hard work to not let the crisis overwhelm the happy moments. We have made very difficult decisions and worked tirelessly to not let our lives be consumed by what we are dealing with.

And we haven't done it alone. These last 10 months we have been surrounded by family and friends and strangers who became friends. We have learned a lot. Cried a lot. Loved a lot. And lost a lot.

And we've had some amazing experiences as well as some simple, everyday moments that in retrospect are lasting memories.

We have lived. A lot.

We had a pet turtle for two days. We saw a rattlesnake. We sat through hours and hours (and hours) of soccer. We have danced (I promise, I'll write about the recital). We have had hours (and hours) of therapy. We have gardened and picked and canned. We have visited family, celebrated milestones, and had surgeries.

In the midst of prolonged crisis, we have lived. And loved. And laughed.

On January 1 of this year, we anticipated 2014 going a little bit differently than it has. "A year of milestones," we predicted. Tim turning 40. Isaiah turning 18. Celebrating the 20th anniversary of our last first date. New school for Isaac. New soccer team. Ballet and tap. And so much more.

That all changed on January 9.

Actually, everything changed. Our lives were upended, and we couldn't see a way out.

Yet, here we are. Having lived a lot in the last 10 months.

And we have the pictures to prove it.


Drawing. Always drawing something.

Hiking the woods where the Hunger Games was filmed.
Dupont National Forest.

Isaac winning a scholarship for a years
worth of dance classes. 

Soaking up every minute on stage.

She has TOTALLY mastered photo bombing her brother.

#stopit

Dance recital.
(I promise, the post is coming soon.)

This child is 18 years old. An adult.
I'm the parent of an adult.
Who still resides in residential treatment.
And I still feel broken.

Some of my favorite moments are sitting on the
sidelines watching this kid play soccer.



© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Monday, October 27, 2014

On the transition from "my child" to "my adult child"

Years ago, I wrote this... And every time I've gone back to read it, I have shed tears. Especially lately. I haven't even been able to read it all the way through.

Isaiah turns 18 years old today.

The celebration will be subdued. It will be at the residential treatment center. It will be short. We received two incident reports over the weekend regarding his behavior--one of which could still include criminal charges.

This is not how we anticipated celebrating such a milestone birthday with him. At all. It is not how we envisioned ushering in an era of being the parents of an adult.

I was telling Tim how awful I'm feeling about this, and he said, "You're right, these were not our plans for his birthday, but our plan was to be his parents, no matter what. This is just the 'what.'"

We miss our son. We desperately want him to care enough about his own future to make different choices. We are praying for the day that he is able to see himself as we see him: WORTH IT.

In the meantime, we will plan the most special celebration we can. At a facility we never intended on needing. We will take a pot of jambalaya and an applesauce cake. We will wrap up the center-appropriate presents.

We will surround him with love.

June, 2004

November, 2006

September, 2009

February, 2011

May, 2013

October, 2013


August, 2014


© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Wednesday, October 15, 2014

Math, Spina Bifida, and other variables



For three mornings in a row, we have gone to Esther-Faith's room to wake her up only to find her awake and sitting at her new-to-her desk. Until we moved that desk into her room, she never initiated math homework. Yesterday, she had an old math textbook and a sketch notebook out and she was concentrating hard, knees pulled up to her chest, in her "Hello Kitty" pajamas. I sat down on her new-to-her bed. "Whatcha doing, Esther-Faith?" I asked sipping my coffee. "Just trying to catch up," she answered without lifting her eyes from the page.



It caught me off guard.

Catch up? On what? With whom?

Does she know? How can she know?

She IS behind in math. Very behind. It has never bothered her. I can't tell if it bothers her now. I just watched her copy numbers from the textbook to the notebook--the pages already full of sketches of ballerinas.



Math was not my strongest subject either. I don't care if she never takes calculus. But how does she know she's behind? That she needs to catch up? Has she picked up on that from us? From the extra work we do every night? The flashcards? From the other kids? Or is she just feeling frustrated in math class every day?



It doesn't matter. She gets up early to study math.

I hate that she knows.

I wonder what else she knows.

Here's what I know...

I love her exactly the way she is right now. Today. Just as much as I loved the adorable three-year-old with the head full of curls, I love snuggling under her covers and reading the books together that I loved at her age. I love talking to her about how to be strong. To be fair. To be gentle. To be fierce. I love that I don't even have to tell her some of the stuff that I tell her. She just knows.




I love that she has decided to volunteer at the animal shelter. Petting cats. Brushing dogs. Taking pictures. She doesn't know why, but she is passionate about taking care of animals that don't have homes. If she had her way, they would all have homes at her home.

I love that.



I love that I learn something new from her every day. I went for a walk along the river across from the dance studio during Isaac's lesson last night. I took pictures of animals along the walk and then went home and asked her what they were. She knew every single one. I want her to know she is really, really smart even if she doesn't quite get math.



She loves movies and video games, but she is just as happy with a pile of legos or markers and a sketch pad. Maybe more happy. I love that my boss (a graphic designer) sent home some professional markers for Esther-Faith, and now she has decided she wants to be a graphic designer, too. I love that there are hundreds of virtual and literal pages of drawings on my ipad and in my house. Of ballerinas and dogs and picnics and camping and people and the solar system and animals and so much more.



I love that she is unapologetically who she is. She isn't afraid to BE who she already IS and strive to be who SHE wants to BE. She loves who she wants to love. She has prayed for her brother every night since he left home. She only sees the good in people. She is just as beautiful inside as she is outside. And she is gorgeous on the outside. She has never let her crutches or her braces or her wheelchair or her diagnosis define her. She will be whatever she decides she wants to be. Because she is strong and independent and confident and smart. She is not Spina Bifida. Or hydrocephalus. Or NVLD. Or any other label that you might think fits her because she learns differently or walks differently or dances differently or engages differently. She is not her diagnosis. She is not disabled.

Don't ever tell her she is those things.

She is not. I know it. And she knows it.

She is Esther-Faith.






© 2014 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.