Tuesday, July 4, 2017

Today, Tomorrow, Yesterday

          A few months ago before we left for China, my oldest and I were in the mall shopping…for a
prom dress.  That was an (expensive) experience and honestly nothing like I ever expected it to be—her dress ended up pastel with flowers rather than the zebra print I wrote about 4 years ago although I did get the part right where I said she would walk into the room and stand out because that’s just the kind of person that she is. When I reread that post  though, I kind of wonder who wrote that because I just don’t recognize that mom anymore. I thought I knew enough to predict what my fears about the future would be for each child (there were only two then) but like so many things when it comes to parenting, I was wrong.

For my “neurotypical” child I worried about peer pressure, grades, and dates when in reality I should have been focused on the day that she would start to think about college and moving away from me and the protection I can offer her from the world.  What will happen if she gets sick when I’m not there? Will she be able to explain to professors and employers what her illness means while still expressing her own competence and dedication without me guiding the words? How will her experiences impact the way she sees people and the world without me to help her process it all? More importantly have I done my job and gotten her ready for the world?

For my child on the spectrum I worried about friends, dances, and sleepovers as well when in fact I should have never doubted that he would indeed find a place where he can just be himself (and given the earlier obsession with Super Mario and then Minecraft and then…. I should have probably been able to guess that spot would be with fellow gamers where obsessions are the rule rather than the exception).  It never crossed my mind to worry about the day that he was “too old” to qualify for autism therapies or how to teach him about life, love, and loss.  Each day I wonder if I have done my job to get the world ready for him?

And nowhere in the equation did I imagine that the parenting methods that worked so well with a little girl would fail miserably when she hit her teen years or that the tricks I learned for a little boy with autism would be no match for a bigger boy with anxiety.  While I’m not sure I even considered the possibility of a child three and a child four, if I had, I don’t think anywhere in the picture would I have imagined myself reading parenting books and leaving post-it notes around the house to remind myself of trauma-based parenting principles. I know I didn’t imagine a day that all of my children would require something different from me and maybe that’s the biggest mistake of all that I made.  Special needs or not, every child is going to have needs and fears very different from another.  As a parent sometimes though differing needs are going to work really well together and sometimes they are going to contradict each other to the point of not knowing which end is up and which is down (hence the need for post-it notes).  I never imagined that would be one of the greatest sources of stress for me along with the constant wondering and worrying if I am getting any of it right. 

A few days ago I took our three dogs for a walk down a dirt road in the country.  One dog was pulling hard to the left, another dog was pulling hard to the right, and one was trying to run down the middle of the road.  We were some place unfamiliar to them and with conceivable unseen dangers so I knew that letting go of a leash simply was not an option.  At the same time I doubted my ability to keep my footing and worried not only how we would keep moving forward but also how I would turn us all around to head back to the house when we had reached our end point. I gave a few illogical commands, said a few words that I’m pretty sure weren’t appropriate, sweated a lot, and eventually somehow we got back home in one piece. Ironically through the entire walk, I kept thinking what an appropriate metaphor for life the walk was. I can worry about the future all that I want, but when I look back on what my concerns were a mere four years ago, I didn’t get it right.  I didn’t think about how strong and capable my children really are and I didn’t give them enough credit or presume competence. In a few years I will look back on this post and wonder why I ever had the concerns that I did while (probably) foreshadowing a new set of worries (because I’m a slow learner).  At the end of the day, special needs or not, my babies will always be just that….my babies. 

Tuesday, March 7, 2017

Deconstructing Okay

In much of my professional career, I spend time talking about dialectical tensions or the idea of moments in life being products of opposing tensions.  For example, that friendship that allows you to define you who are also prevents you from reaching your full potential or that place that safe place that helps you find your voice prevents you from speaking out because you don’t want to threaten the safety of the space.  Baxter and Montgomery’s (1996) dialectical tensions isn’t just interesting to talk about, I find it particularly useful in much of the research that I conduct.

The thing though about dialectical tensions is that they explain strains occurring within a singular moment in life. 

On January 19th I experienced something very different and continue to do so.  I woke up and was probably complaining about something that I thought was very important in life; most likely not having everything ready for the start of the semester or laundry done or something petty and menial like that.  I went to an appointment, when I left that appointment my husband was waiting in the parking lot for me.  I’ll never forget that moment, seeing him standing against my car.  I knew it was a something and the something wasn’t good.  I remember thinking if I don’t walk over to him he can’t tell him but my feet kept moving anyway and sooner than I would have liked he was delivering the news that my father was gone from this world.  I had no idea it was possible to feel so numb and yet so much pain at the same time. 

Then an hour later we got a phone call that our LSC/LOA had formally been accepted.  *For those that don’t speak adoption, this means that our formal paperwork and our little girl’s formal paperwork had finally been matched and approved by both governments. It is a huge step in the international adoption world and usually signals an over-the-moon reaction. To put this in perspective our little girl has a genetic condition that traditionally means shunning in orphanages.  We’ve heard many cases where children as old at 10 or 11 years old are still receiving bottles so that no one has to interact with them to feed them; we have no idea if this is our daughter’s case because no one has adopted from her orphanage for about a year but it is possible and getting her home is incredibly important for this and so many more reasons. 

This isn’t and wasn’t a singular moment but instead parallel moments causing and continuing to cause a continuum of tension between grief and celebration and tears of sadness and tears of joy. 

It’s like being kidnapped, blindfolded, and being placed on a roller coaster with no idea which way is up and which way is down.  One email or telephone call brings reminders of things that have to be “taken care of” to “finalize” this or that account that needs “placed” in my name and then another email or telephone call reminds us to update immunizations, has us picking out hotels, and finds me on Amazon looking for a lovey that our visually impaired darling can call her own.  Some days my heart, head, and stomach aren’t even speaking to one another they are on such different emotional planes and I’ve given up on answering the innocently asked question how are you because the question literally depends on which parallel you are referring to.  If you are asking about my dad, the answer is lousy.  If you are asking about my daughter, the answer is can’t wait.  I don’t know how to reconcile those answers and I certainly don’t know how to feel nor demonstrate those at the same time.  It’s kinda like this whole parenting, special needs gig, I didn’t get a manual.  I’m making it up as I go and I’m really looking around hoping the real adult shows up something soon.  

Until then I’m going to keep on keepin’ on and hope that eventually I can find a new normal where grief and happiness can coexist in a way that allows it to be okay to just be okay without any explanation.  

Tuesday, February 14, 2017

Dear Dad: A Memorial Letter to Gerald F Butler

Dear Dad,

Born May 7th1937 in Weston, West Virginia you lived the transitions from black and white to color television and polaroid to Kodak to digital photography. You purchased one of the first microwave ovens that came on the market as well as one of the first dishwashers and smoke detectors for your first home in Philo, Ohio.  You gave me my first Commodore 64 computer, Sony Walkman, and you purchased me a video camera to help record memories after the birth of your first granddaughter in 2000. You also got mom a whole lot of kitchen gadgets that I'm pretty sure she still doesn't know what to do with.  On the plus side at least you only had to eat fish sticks the first year of your marriage. 

It is interesting the misconceptions that people have of only children; they often think that we grow up leading lonely lives. They would be wrong. When I wanted to learn to run track, you took me out behind the barns and taught me to run.  You took me to the lake to learn to swim.  Dang, life’s rough when your dad was a former frogmen/navy seal.  I decided to try out for basketball; you played basketball throughout your entire highschool career so you taught me to play. Sorry I didn’t make the team; I hope you weren’t too disappointed. I had more fun playing with you anyways. Oh yea, and we had that cool rope swing that you got the great idea to have swing over the huge embankment.  That was a lot of fun; the whole two swings we got in until mom caught us, and made you take the swing down.  I’m not entirely sure, but I think you got one of those talks that usually made you roll your eyes and grin at me. 

I’ll never forget the night you came home from work and told me that we were moving to Snortin’ Ridge.  I didn’t want to move; I had a best friend and a cool bedroom and a teacher that I really liked (even if she was the reason I was and am a vegetarian).  I also had a playhouse and cool neighbors.  You asked me to come over to sit on your lap.  I could never stay mad at you when I was sitting on your lap.  I always felt so safe and snuggly in your arms.  But you promised me a horse; my very own horse if I was okay with moving.  Okay?  Hand over the boxes, let’s go.  Best yet, a couple of months after we moved and were settled in, Gypsy came home and was the best horse ever.  A year or so later, Moochie came home and was the best pony ever.   I sure wish I would have realized to appreciate them more.  I’d give anything to have a horse and that time with you back.

I guess what I didn’t realize until now is that I was as much a daddy’s girl as Ry was a grandpa’s girl.  I followed you around as much as she did and reaped the benefits and rewards as much as she.  Of course, she like me also experienced the Butler "sense of humor."  We have pictorial evidence of the infamous lemonade tree that you convinced her was the source of her beloved drink but she should count herself lucky at least she didn’t go to high school and ask her science teacher about milking a pigeon like a certain unlucky daughter did.  She also didn’t come home from a date and have the porch light automatically turn on to find a scarecrow body swinging from the porch ceiling—I’m still convinced I got my first scare wrinkle that night. Then again at 16 she is convinced we have to leave Wisconsin and head back to Ohio to find really good cheese.  And in elementary school she was convinced she needed a plan just in case a band of wild high schoolers broke into our house—according to you and her, she was going to hide in the bear cave with her shot gun and some cheese until it was safe to come out.  Of course she would be wearing her boots just like grandpa—I think you got her her first pair well before she could walk but I think I also had my first pair before I could walk from your dad. Then again my dates were treated to being met at the door by Bandit, the rescued racoon, and having to feed her chicken, oreo cookies, and marshmellows if they wanted to get back into their cars. I suppose that that time Dan and I convinced Ryley we were going to leave her with the Medicine Man for a few months was kinda almost similar in an apple truly doesn’t fall far kinda way.

Everyone knows the love story between you and your girls, but what I don’t think most people realize is the connections you had with your boys.  You and Caden had a rocky start.  Caden didn’t respond to the usual Jerry Butler tactics—Caden marches to a different beat---we call that drum beat autism now but we didn’t know that at the time.  For the longest time he was terrified of the back of your head if you had a hat on and the front of your head  without a hat.  But he could tolerate and even enjoy your company if you wore a newspaper, so that’s what you did and in time you two worked out a pretty darn good relationship that didn’t even include newspapers.  He loved the stories about the weasels and eventually was even able to play along in the stories although he never quite knew if the weasel was real or not and honestly he didn’t want to know truth. The magic of the stories was in the not knowing.  His Butler skill is the ability to tell the same knock knock joke over and over a million times and ironically the millionth time he still finds it funny.  He is usually the only one, sound familiar?

He also got your heart dad.  Elf, his service dog, is your Tandy/Waggles/Squeaker/Teddy and every other dog you have ever loved.  He is fiercely loyal to his dogs and his cats.  He reminds me of the winter you were coming home from Western Freight and you heard the faint meowing.  You searched and searched in the bitter cold before finding a tiny kitten stuck in a phone booth.  You knew he wouldn’t last long so you kicked in the frozen door and brought Henry home.  Caden is destined to rescue the Henries of the world; I know you will be proud of him.  
Dad and Teddy Bug

Ryley and Sophie

Caden and Elf
 Butlers and Animals: Might be another one of those family traditions
Jenn, Willow, and Rascal

He told me that he isn’t sad that you are gone because he knows you are really happy where you are cause you can breathe better but he sure wishes you had email.  I agree with the sentiment but I’m much more selfish and miss you like crazy. Email would be nice though. 

Then there’s Sayre.  Sayre has your independence and although he’s only 4 he is going to be like you in that he’s going to be able to fix anything or at least tear apart anything that he decides to.  He also shares your love of anything with wheels.  I think if he was allowed he’d have a motorcycle but kinda like mom wouldn’t let you have another motorcycle after your really really really bad accident, I’m trying to prevent his dad from even letting him have a three wheeled scooter but......

  He has no fear just like you. Sayre talks about grandpa’s house and his tractors all the time.  You’ll always be his John Deere Green grandpa and I’m pretty sure that’s not a bad thing.  I'm also pretty sure he'll never read directions nor think he needs to and I'll withhold judgement on that one because just like you, he'll never listen anyway. 

I wish you could have met Emeri, but I promise she will know you dad.  I’m going to make books for the kids and pillows out of your flannel shirts for them.  Please don’t roll your eyes at me like that—I’m going to use my sewing maching so you and grandma Butler should be pretty happy at the moment, assuming I don’t sew myself into the shirts or anything ridiculous like that.  Just promise me that you’ll visit us dad and maybe help us in China because I’m nervous.  Emeri has had a really hard life and you were always so great with kids; we could really use your loving touch to make her feel safe.

As for mom, she misses you a lot but she's strong like you and she's going to be okay.  You two had a pretty amazing marriage.  You set the bar kinda high; I hope Dan and I are making a family that you are proud of.  I wish I would have known to appreciate and cherish time together sooner dad.  I wish I would have spent less time as a kid and young adult being selfish.  I wish my kids would have known to listen more.  But as I read at grandpa’s funeral, that’s the way of life, isn’t it.  And I know we had a good one.  I would do anything to be selfish and ask for just a little bit more time together but as you would say we get what we get and now it is time to just keep on truckin’ so I’m going to try dad.  I’m going to try to be the person that you would want me to be as a parent, as a wife, and as a daughter.  I’m going to try to take care of everyone dad.  I know I’ll make mistakes, because I’m just not as strong as you but I promise I’ll keep on truckin’.  Over and out rubber
May 7, 1937-January 19, 2017



Thursday, January 12, 2017

Rainstorms, Landslides, and Rainbows

     Have you seen my Guardian Angel? I’ve got some things I want to say, like how did you miss that landslide headed my way?
Disappear by Good Enough

Although I’m entirely partial to my wonderful husband’s songs, this one does pretty accurately describe my state of mind at the moment.  After living in the special needs world for 16 years, I guess I kinda thought I was immune to the hidden landslides anymore. And yet here we are; just as I learned to dance in the rain, the rain turned to a lightning storm that has me dashing and dodging just to try to stay ahead of the next hit.  
In some ways, I feel like I did back on the day that I heard my baby probably wouldn’t live, and that the best thing for me to do was to go home and plan a funeral. Or maybe the day I heard that the narrow window of opportunity for making gains on the autism that had rendered my child language-less was quickly closing, and that resources simply weren’t available.  Or maybe the day that I heard one surgery was going to be months and months of surgeries, casts, and wheelchairs with only a hope that my child would walk again.  How about that day when I accidentally read the medical report and diagnosis of epilepsy before the doctor’s office had a chance to call?  Or the moment when I watched one of my babies play by themselves on the playground because no one else existed in their world.  Or maybe…
In my naivete, I thought we would overcome challenges.  And in many many regards we did.  That death sentence has been proven wrong year after year, and the language that wasn’t supposed to come is a nonstop litany of random facts, stories, and gamer talk.  That little one in a wheelchair hasn’t stopped running and is now even learning to ride a bike.  Overcoming the challenges.  And somehow there has been comfort in being able to look back and reflect on “how far we’ve come,” and unintentionally or otherwise envision a finish line after which we crossed, life got easier or at least less complicated.
I’m glad, though, that I didn’t know then that the needs and challenges wouldn’t go away; instead they would grow and change with each child at each new step in their journey.  That child who passed the age of 5 against all medical odds would one day be facing not only a new set of life threatening conditions, but would also have the desire to plan for a life of friends, relationships, college, and jobs.  My challenge is now figuring out how to balance the need to dream with the reality of the new tests results rolling in.  Not to mention learning how to address concerns when Google becomes as much a source of information about scary sounding diseases as I do.  
That child who was so content to play alone on the playground would grow into a child who desperately needs and wants relationships.  That child has made so many gains, but those gains have come with an understanding of how they are different than others and a desperate desire to be like those others at the same time.  Awareness has brought new challenges of anxiety and heartbreak; pain that is no longer eased by a line of cars or a familiar script.  My challenge is try to figure out if socio-emotional needs or academic needs are more important because we aren’t in a situation where both can be met simultaneously with any of the organizations available to us right now. 
As much as it dates me, I have always loved the movie Sweet Home Alabama.  That scene where Melanie in her wedding dress goes out on the beach to find Jake who is placing lightning rods in order to create more of his lightning sand sculptures during the storm, yea that scene gives me the warm fuzzies every time. All the risks of being out in that storm, just for the chance at love and beautiful glass.  I don’t really know if lightning and sand make glass (and I’d really appreciate those that know the truth, not tell me), but I guess that’s how I see this current landslide my kids and I are dodging.  Without the ugly, we can’t ever really appreciate the beautiful.  Without the heart stopping moments and gut wrenching tears we can’t truly understand the calm that can occasionally appear in our hearts, nor the happiness that is around us. 
I’ve always said that I am a planner, but maybe life happens when you are waiting for the perfect time for the perfect plans.  I have no idea what this year holds for my little family as we continue to navigate our challenges and open our hearts and home to another little person who has needs and wants that we will have to figure out.  Maybe when you spend so much time dancing in the rain, it’s only natural that a landslide is going to hit every once in awhile.